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Monday, 23 April 2018

#ExpOfCare Week; A Patient Perspective on Professionals' Attitude, Behaviour, Approach & Compassion & its Effect on Experience Of Care


#Hellomynameis Lucy Watts MBE. I’m a 24 year old young adult with a progressive, life-limiting condition that has caused very complex medical needs. This means I spend a lot of time in the company of healthcare professionals and far too much time in hospitals, but I am proud to say I have the most incredible medical team to whom I owe both my survival and also the incredible life I live, as they work extremely hard to give me the best quality of life possible. 

I was born with health problems and struggled through childhood, but I became disabled and seriously ill at the age of 14. I initially was diagnosed with hypermobile Ehlers-Danlos Syndrome due to my joint hypermobility but we now know I have a neuromuscular disease, for which we are on a diagnostic odyssey, trying to find the cause, and I have complications affecting most organ and body systems. My condition means I am Total Parenteral Nutrition (TPN) dependent, require regular intravenous and buccal medication, I have a gastrostomy (PEG) constantly draining my stomach of the fluids my gut can’t process, I have an Ileostomy and a Urostomy, and I am dependent on a specialist electric wheelchair and spend a lot of time in bed. I have 24 hour care, 16 hours of which is provided by an intensive care nurse, and I have been under palliative care since the age of 17. I’ve outlived my original prognosis, and am determined to far exceed it. 

I have an incredible medical team who work extremely hard to keep me alive but also give me the best quality of life possible too. It hasn’t always been this way - we’ve had to fight hard over the years to secure support, and even now there are battles that go on at times - but the medical team I have around me now are fantastic. They view me as part of my own medical team, appointments consist of both of us sharing our desired outcomes and then we work together as to how we can achieve those. They also respect my views and opinions and listen to what I say, respecting that they may be the experts in medicine but I am the expert in my own body - I do live in it, after all! 

Over the years, I’ve experienced the best and worst of care. Healthcare professionals’ attitude, behaviour, approach, communication, friendliness and compassion all affect our experience of care. A supportive, kind and compassionate healthcare professional who is very approachable and friendly can give the patient such a positive experience that even when the outcome of the appointment may not be what the patient wanted, that experience overall was a positive one. On the other hand, a healthcare professional who is detached, lacks compassion, isn’t approachable or friendly, can give a negative experience, despite nothing bad happening with their care. It’s important professionals give patients that positive experience. That said, I know everyone has bad days. They’re unavoidable. However, healthcare professionals need to be self aware and be able to adjust their behaviour so that a bad day for you doesn’t mean a bad experience for the patient. 

I wanted to share some experiences of mine to evidence positive/negative experiences of care and how they relate to the attitudes, behaviours and other attributes of the staff caring for me, as I mentioned above. 

Attitude:

Attitude can have a big influence on experience of care. I have many experiences where attitude has made amazing - or completely broken - my experience of care. 

My current team, as I’ve said, are amazing. Their attitude towards me is an attitude of respect. They respect me as an individual, not just with needs, but wishes, goals and a life to live. They also respect and value my input into my care and my wish to take responsibility. They view me as a member of my own medical team, they work in partnership with me - we’re all part of the same team - and we have a very collaborative relationship. They also value the fact that I take charge of my own health and wellbeing and so they know that I will follow treatment plans and act upon their suggestions, but also that I won’t ask them for help unless I’ve tried all tools at my disposal to manage things. This respect, value and collaborative attitude from my medical team means we have a great relationship and I feel valued, I am listened to, and thus I have a good experience of care. 

However, attitude has been an issue in some of my experiences. When I go to my local hospital, their attitude is that my attempts to input my knowledge of my condition and needs into discussions and ward rounds as me challenging their authority and me being disrespectful and trying to tell them their job. It’s not, it’s simply sharing my knowledge of how specialist teams manage my condition to try and make my care more efficient and make sure things aren’t done that will exacerbate my condition. I am trying to help, not hinder.  

Behaviour:

Behaviour is something that is often overlooked. Attitude and behaviour are often closely linked. In behaviour, I also include the physical way in which my care is delivered. 

The biggest thing that often gets talked about, is doctors standing over the bed, above you and talking down at you. Sitting down next to the bed can be far less imposing and immediately improve the feeling for the patient that the doctor is on your level. Being ‘above’ you gives the patient the feeling that they are in a position of weakness and the doctor is in control of the situation and that the patient is somewhat powerless. Sitting beside the patient, talking on their level, gives a feeling of an equal footing and a more compassionate situation. 

Now, attitude and behaviour are closely linked. If you come in with a negative attitude, your behaviour will come across to the patient as negative. If you come in with a positive and open attitude, your body language and behaviour will reflect this. Such a minute change in attitude can change the whole perception and experience of the patient. Little things make big differences. 

Also and this is a controversial one, it is okay for a professional to get upset in front of a patient when bad news is delivered - so long as the patient doesn’t end up comforting the professional! Holding someone’s hand, sitting on their level and showing your emotion at this situation and difficult conversation actually shows you’re human and compassionate. I’ve had bad news delivered in such compassionate ways. When I was told my prognosis was to be less than 5 years in 2012, my consultant sat on my bed, put his hand on my knee and talked to me. Human to human. He listened, he took all the time we needed, he answered questions and he assured us this didn’t mean giving up, just refocusing attention from quantity of life to quality of life. We already knew my condition would shorten my lifespan, we’d known that for almost 2 years, but going from “we know it’ll shorten your lifespan” to “you’re not expected to see 5 years” are two very different pieces of news to process. That kindness and compassion, the attitude, behaviour, listening, taking the time, talking to me on my level and reassuring me and showing me he was human like me, made all the difference. 

Communication:

Communication is a big buzzword at the moment, so much work going on around communication. Being clear and concise, but being kind, listening, flexible in your approach and talking to us on our level is vital. Communication is not just about what you say, but how you say it. Delivery is everything. Bad news delivered in the most kind, compassionate and supportive way will still lead to a good experience, despite the news being bad. Good news delivered by a detached, unemotional and abrasive way, as if you have better things to do and you don’t have time for this menial task will automatically cause a bad experience, despite the news being positive. For example, asking “what matters to you” rather than “what’s the matter with you” - approach to and way of saying things can make all the difference. 

Communication is also a lot about listening. Listening to the patient can have a huge impact. Even if you cannot do anything to alleviate the issues raised by the patient, simply listening to them and letting them talk through things is important - and often will reveal information that may aid you as the professional. You never know what you could miss if you don’t take time to listen. 

Also, shared decision making is important. Giving us the information and supporting us to take responsibility and be engaged in decisions is important, but that can only be done with open communication, support and enabling informed decisions by giving all the information. 

I’ve had doctors cut me off about things, they’ll ask me a question and when I start to explain they’ll cut me off, as if asking an open ended, qualitative question can be answered with yes/no when in fact, it’s never that simple. I know doctors (and nurses) don’t have all the time in the world, but listening is hugely important, being listened to and being heard is of utmost important to patients. It can make or break their experience of care. 


Approachability and friendliness:

This reiterates partly what I said in attitude and behaviour. Your attitude and behaviour will have a direct link to the patients’ perceptions of your approachability and friendliness.

You must always introduce yourself, giving your name and speciality/position - #hellomynameis is vitally important. Patients may see dozens of different professionals over the years and/or over the course of an admission, so knowing who people are, what department/specialty they’re from and what their position within that department is, can help patients to feel more at ease as they know who they’re dealing with and where they’re from. It’s also polite! I have said a few times recently, knowing who is looking after you can be the difference between a stranger coming in and doing things to you, vs a professional coming in and doing things to support and assist you - doing things with rather than just to us. 

Always ask how we are too - and be prepared to listen. If you are seeing a patient for a period where you’ll only see them whilst inpatient and then you won’t have dealings with them again, try to understand what your patient is like when at home, to better understand them, their wishes and their life ‘outside’. I make a habit of taking photographs into hospital with me so professionals can see me when stable and at home. You may see us at the worst times of our lives, but we do have good times and lives to live too. 

Also - smile! Smiling is a universal language and coming in with a smile will brighten up us patients’ lives and our experience. 

Compassion:

Compassion is more than just caring. Compassion is an action as well as an attitude and a behaviour. You can’t be compassionate if you don’t practise compassion. 
What is compassion? I describe it as: caring, consideration, communication, courage, contemplation, respect and empathy. It combines all of these. Compassion is about caring for and about the patient. It’s about considering their feelings, thoughts, wishes and experiences. It’s about communication, having open, honest but kind and considerate dialogue. It’s about having the courage to invest your feeling and emotion into the patient. It’s about contemplating how you would feel, think and react in that situation. Respect goes both ways and all good relationships are built on mutual respect, but its also about respect for their story, their experiences, their wishes and their unique situation; they’re the one living this life. Finally, empathy. Not just sympathy, but genuine empathy. Feeling and understanding your patient and how they feel and what they’re going through. Empathy for their struggles and the battles they face. Empathy for the fear, the sadness and the frustration. Remember, often you’re seeing us at some of the lowest points in our lives. As I said, compassion is an action as much as an attitude and behaviour. 

Every time I’ve experienced compassion, as I have many times, it’s made a huge difference to my experience. From the HCA who held my hand and cried with me as I screamed in pain from a bowel obstruction, squeezing my hand and stroking my hand so I knew I wasn’t alone. To the doctor who sat on my bed and put his hand on my knee as he delivered the prognosis that I wasn’t expected to live another five years. To the student nurse who sat with me and told me stories to distract me from the pain as I lay alone in hospital overnight, acutely unwell whilst Mum went home for the night. To my palliative care nurse who asked me what mattered to me rather than what was wrong with me, and who turned end of life conversations into conversations about things I wanted to do and achieve whilst I’m living. To the doctor who has seen me at the worst times of my condition who declared to a room of doctors, patients and families that I am his favourite patient for how I get on with things and live my life and do things to benefit others - who also sent me an email congratulating me when my MBE was announced. I could go on and on about the compassion I’ve experienced in my care. 

I hope you’ve found this blog useful, I apologise it’s so long but I had so much to say on this. 

Lucy Watts MBE

Wednesday, 18 April 2018

A Political Manifesto By Molly Dog


My name is Molly (Molly Dog [with a blog] to my followers) and I am a 5 year old working class, dog, a Working Cocker Spaniel to be precise. I live in the beautiful place called Benfleet in Essex, where we have beaches, open spaces, parks, woods and lovely countryside and of course, that means nice walkies for me. I live with my owner, her mother and her sister in Thundersley - it comes up as Benfleet on address but we Thundersley-ers are trying to get Thundersley recognised. We are in the Castle Point borough and our MP, Rebecca Harris, is a fan of mine (and a good supporter of my owner). I’m a very political and well travelled dog, I have been to the House of Commons, the House of Lords, the Department of Health, NHS England, and even the Commonwealth Heads of Government Meetings (to the Commonwealth Youth Forum). 

This is my manifesto for the upcoming election. #MollyDogforPrimeMinister


I am a working dog, an Assistance Dog. Therefore I have worker’s rights at heart, a good living wage for all, safe working hours, sick pay, option for flexible working and working from home where possible, maternity pay and rights, equality of access to employment and bereavement leave for parents whose child has died, amongst other things. I also have equal pay at heart, as a working female, we should be paid equal to our male peers - we’re not ‘worth’ less and shouldn’t be treated as so. Sexism shouldn’t be tolerated. Also, disabled people should not be discriminated against when applying for jobs, yes they have the right to an interview but they are still not employed or given a fair chance! Equality for all. 

I assist a disabled young lady named Lucy - known formally as Lucy Watts MBE - who suffers as a result of cuts to benefits, to care packages, the funding starvation of the NHS and the disgusting attitude towards disabled people that is often propagated by the government and the media. Disabled people are living at or below the breadline, more and more plunging into the deepest depths poverty and benefits keep being reduced. They think reducing benefits will get more disabled people into work, despite the fact it makes them even less able to work. People are losing out on their benefits and some losing their only ability to get out, their adapted Motability car. Cutting care packages leaves disabled people trapped - and again, where able to, still unable to work as they don’t have the care and support necessary to do so. We need more investment in the NHS and social care. Period. Oh and bring back the nurse’s bursary. You made a fatal (in every sense of the word) error by scrapping that. Shortsightedness is a common theme, no? The NHS is slowly dying with the cuts and privatisation. Our NHS is failing, not because of its own fault, but because of underfunding and underinvestment and constant selling off of services that then cost two, three, four, five, six (plus) times as much to buy-in. Wheelchair services needs better funding so people aren’t left fundraising for wheelchairs - and other equipment. You can’t fund everything, I know, but wheelchairs are essential equipment and if people can’t cope with a cheap bog standard wheelchair, they shouldn’t be left without or left fundraising. Also, disabled children should be able to get powerchairs before they start school. Social interaction and inclusion is vital and independence of movement and participation needs to be enabled through providing a powered wheelchair. Our 5 year old friend Fraser was refused a wheelchair he needed in order to start school as social inclusion was deemed unimportant and Fraser’s case not exceptional enough to provide funding for the wheelchair and his mum Shelley and dad Geoffrey were forced to fundraise for his powerchair. My mummy Lucy has also had to fundraise for her powerchairs, as the NHS couldn’t provide a suitable one each time - needs change too, thus wheelchair requirements change over time, so Lucy needing more than 1 wheelchair in a 5 year period is not ‘greedy’, her needs rapidly changed thus she needed a new wheelchair. Onto care packages. We need more funding! It is not a choice to need support and we shouldn’t be rationing meals, showers and other things as packages are cut and cut and cut some more. Social needs are important. Stop saying they aren’t. Stop telling people going out isn’t necessary. Stop telling my mummy Lucy she’s expensive and is taking care away from other people - she didn’t choose to have complex medical needs nor did her mum Kate choose to develop a brain tumour and have a stroke after more than 7 years of caring 24/7 with little support. We need more funding for the NHS and social care. Urgently. 

We need more investment in education, including for those with special educational needs, whether attending a mainstream or specialist school. They need help. Education is the cornerstone of society. Also, reduce those damn university fees! You’re making young people (and adults) struggle under the weight of humongous debts for most of their life! So wrong. However, we must also appreciate that education isn’t for everyone. Vocational courses, supported learning and apprenticeships need investment. 

I support #FinnsLaw in that attacks on working police dogs should be classed as level with attacking a member of the police force, not as criminal damage like for a property - dogs are living beings, not a piece of equipment or property! https://www.finnslaw.com/

I also support #LucysLaw to ban the sale of puppies by pet shops & all commercial 3rd party dealers. You can sign the petition here - https://petition.parliament.uk/petitions/213451 

I welcome the recent Children’s Funeral Fund - at last! However the funeral sector is getting out of hand with the costs a little. Just saying. 

Changing Places toilets should become law. Changing Places toilets are truly accessible toilets with room for a wheelchair and 2 carers, has a hoist, adult sized changing table, a toilet with room both sides for a wheelchair or carer, lowered sink (and mirror) and curtain for privacy. They’re completely different to standard disabled toilets and benefit thousands upon thousands of disabled people like Lucy who have complex needs and can’t use a standard disabled toilet. 

Touching anyone without consent - including bum slapping - is assault if it is not wanted. Touching anyone in any way that makes them uncomfortable without their consent should not be tolerated. It’s a violation of their body autonomy. We need tighter laws around stalking. Cyberbullying needs to be clamped down on - it’s not ‘just harmless banter’ as is often said. Hate crimes against all minority groups including disabled people should not be tolerated and should bring longer sentences. 

We need more investment in the emergency services, into the police, the fire service and ambulance service. How can we respond to incidents or prevent crimes if we only have skeleton staff? 

I was a remainer in the EU referendum but to be honest, regardless of that I am terrified at the terrible mess Brexit has been so far, whether you voted leave or remain you’ve got to admit, it’s been a pretty shoddy and haphazard process so far! I worry for the future of the UK, including the NHS and the care sector and for people like Lucy who depend on staff from overseas, especially the EU, in order to function (Lucy requires 24 hour care from intensive care nurses and overnight carers and has lots of people from overseas). 

I could go on and on, but I appreciate not everyone is interested in reading the whole manifesto. These are just the highlights. 

My followers have been saying Molly Dog for Prime Minister for a long time. Maybe it is time someone with a heart and a love of everyone regardless of age, ability, race, religion, place of birth, status, class, sexual orientation and gender identity was in charge? 

Would you vote for me? I may be a dog but I seem to have more knowledge and more of a heart than our current incumbent PM and political party. And I ‘get’ the issues people face. And I give a damn about everyone. Every. Single. Person. 

Yours sincerely, 
Molly Dog. 

If you want to support my Manifesto, I request social media shares and if possible, a donation to my party - well, to my chosen charity, Dog A.I.D. (Assistance In Disability). They help disabled people like Lucy train their own dog to become their Assistance Dog - with less than a fraction of the funding of larger Assistance Dog organisations and running almost completely on volunteers, very very few paid staff. Isn’t that amazing? www.dogaid.org.uk 

Want to get to know me and follow my life and work?




Wednesday, 14 March 2018

RIP Stephen Hawking; A Hero Of Mine


We awoke today to the news that one of our greatest minds, Professor Stephen Hawking, has passed away age 76. Stephen was an incredible person, he had intelligence that knew no bounds, determination and inner strength that would rival any great person, he personified perseverance and possessed a zest for life - and a wicked sense of humour. 

We all respected Stephen Hawking, whether you were interested in his work or not, one could not fail to be amazed, inspired and impacted on by Stephen. His legacy will live on in the world of science, of quantum physics, of our understanding of life and how it all began. 


Stephen lived with a terminal illness, one which he was diagnosed with at the age of 22 and given just two years to live; Motor Neurone Disease (MND), specifically a rare, slowly-progressing Amyotrophic Lateral Sclerosis (ALS). Stephen, however was determined; defiant. He was going to complete his studies, he was going to contribute to the world of physics, he was going to live life. And that, he did, becoming one of the greatest minds, one of the best - if not the best - physicists, a university fellow, a writer, a husband, a father, a friend and a teacher in every sense of the word. His contribution to the world is immeasurable, no words can quantify it. He will not disappear into a black hole, his legacy will live on for years and years to come.


However, for people like myself, his life and achievements held another meaning. His determination to succeed, his refusal to be restricted by a terminal illness, his defiance towards living to the expectations of people with disabilities, his ability to persevere, and his ability to overcome his failing body with his incredible, unlimited, boundless mind, were a source of great inspiration to us all. The way he was, he lived, he thrived and he achieved served so much inspiration for many people like me, with disabilities and with life-limiting illnesses. He showed us that our bodies may be failing, but that doesn’t mean our minds should be limited. We can still do and achieve, just like our fellow non-disabled peers. He also reminded us all that “however difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up.


He held so much inspiration for me. Born with health problems - and a number of them - that went undiagnosed through childhood and that progressed over time, causing me to struggle more and more the older I got, my body finally ‘gave up’ at the age of 14 when I became disabled, dependent upon a wheelchair and round the clock care. I developed multiple organ failure and over the decade since my body gave up, I’ve had to live with a condition that has continued to progress, involving more organs, more systems, causing more complications and making me dependent on ever more specialist interventions to survive. I was told my illness would shorten my lifespan at the age of 17, then told I had a prognosis of less than five years in 2012. Yet, I am still here. Me exceeding my prognosis is not to the extent of Stephen, who survived 54 years beyond his prognosis, but nonetheless, I hope, like Stephen, my survival shows what one can overcome when you have determination, drive, passion, inner strength and a positive focus in life. My palliative care nurse last year said that she thinks that if I didn’t have my voluntary work, I probably wouldn’t be here today. In the same way, I think Stephen’s work has helped to keep him going. Like Stephen, the support of my family has also kept me going, too. 

His ability to overcome obstacles has always inspired me. His ability to use his brain in such an incredible way despite a broken body, has always motivated me to not be limited by my physical disabilities. Stephen had the most incredible brain. He had such drive, determination and an unshakeable passion for his work. Stephen would conduct painstaking work every day in pursuit of doing what he loved, contributing to science, making a difference and to making his impact on the world. I feel a real affinity to him, as this is what I feel about my work. My work keeps me going, it is my passion, it is my life, it keeps me going and it gives me great pleasure and satisfaction. As they say, “If you love what you do, you’ll never work a day in your life.” I absolutely love, enjoy and thrive on the work I do. It allows me to contribute to society in the ways I can. My condition will limit my lifespan, but it won’t limit me and my achievements and my potential. It also provides a positive distraction from the pain and the things I go through and distracts me from worrying about the future. It’s taught me to live life in spite of a life-shortening condition. It’s taught me to make plans even though they may change or be cancelled. It’s shown me that my life is worth living. 


So today, I say thank you to a hero of mine, a man so great that words will never quantify his magnificence. I take my sadness at his death with the gratefulness that he lived, that he loved, achieved and inspired. I say thank you for giving me hope and for showing me that, in the darkest depths of my illness, that no obstacle is insurmountable, that disability and illness is not the end of the world, that life can be both broken and beautiful at the same time, and that life-limiting illness doesn’t have stop you from living life to the full. Let’s face it, life has a terminal prognosis, we’re all dying. However, people like Stephen Hawking and myself have faced death and thus we know the true value of life. 








Saturday, 10 March 2018

Hope For A Diagnosis: My NMCCC Admission March 2018 for a Muscle Biopsy


This week I was admitted to the Neuromuscular Complex Care Centre (NMCCC) at the National Hospital for Neurology and Neurosurgery, Queen Square (NHNN). This admission was for my muscle biopsy, long awaited - I’ve been waiting since 2016, and we had a last minute cancellation last year in July. I am cared for by Dr Ros Quinlivan, neuromuscular consultant who works across Great Ormond Street Hospital (GOSH) and the NHNN, and in charge of my care this admission was Dr Khan, who was with Ros’ team for this rotation. The staff on the NMCCC are fantastic too, mum stays with me to provide the 1:1 specialist care I require but they can never be more helpful and are so kind, you can always have a good chat and a laugh with the staff. 

I was admitted on Wednesday, had bloods taken, respiratory function checked and so on, ready to have the biopsy. I found out I was on the list for Friday. So that was great, we were just waiting for that to happen. However on Thursday, when the surgical list was checked, I’d been removed from the list - no one knows why - by the administration team in the surgical department and then they also insisted that a form that had already been filled in and sent to them, hadn’t been done. Who knows why I was removed from the list, but there you go. So, the biopsy looked unlikely. Dr Khan worked extremely hard, phoning, emailing and so on to try and ensure I was put back on the list and had a slot to have my muscle biopsy, especially in light of how long I’ve been waiting and having had one cancellation already. He came to see me and told me it was looking unlikely, but that he’d keep trying and keep fighting. Dr Khan said he couldn’t promise me anything would come of it, but he promised to keep working on it - and he did. The best news was, he got my back on the list! So my biopsy could go ahead Friday. Late Thursday evening I was consented by the anaesthetist and we went to sleep in the knowledge that, barring any disasters/emergencies, my biopsy would go ahead.


On Friday afternoon about 3pm, my biopsy went ahead. It was painful, I won’t lie. They can only numb the skin with local anaesthetic (I had it done awake), so when they get down to the fascia and then the muscle, there’s no anaesthetic they can put there, so you feel the whole thing, then digging around and cutting samples out of your muscle. They did it in my left thigh. It was very painful, the biopsies being taken, as was them cauterising the bleeding tissues afterwards, it really was painful, but not the worst thing I’ve experienced. It only took about 30 mins. I came back to the ward and then was allowed home today (Saturday). My leg is very very painful, more so than I was expecting and I’m usually so good with pain, but this I am struggling with. I just hope it eases up, as I have a busy week, including a meeting in London Tuesday and an appointment in London Thursday.


The muscle biopsy results could take 6 months or more, but some get their results back in less time. I just hope the biopsy might lead to a diagnosis, which it could do but there’s no guarantee and a biopsy doesn’t lead to a diagnosis for many, or I hope it’ll show features and defects that will guide us to know what kind of condition we’re looking at. Anything that might help with the diagnostic process. 

People have asked why I am having a muscle biopsy and what we hope it’ll achieve. I hope this explanation will make it easier to understand. This is taken from a Facebook post I wrote before this admission:

“As you all know I was born with health problems that went undiagnosed - despite having lots of issues affecting lots of organs and systems and despite seeing many professionals through my childhood - until I became disabled and seriously ill at 14, then was diagnosed with hypermobile Ehlers-Danlos Syndrome a few days after my 15th birthday. Well, things just didn't add up, EDS isn't a progressive condition (whilst it can get worse over time, the condition isn't by its nature progressive, from what I'm told and the literature that's out there) and doesn't often affect people in the way and extent it has for me and doesn't usually shorten lifespans (in hEDS), whilst I recognise it does for some, it just didn't add up for me. My team admitted it (calling it 'atypical' or 'complex' EDS) and everyone admitted there was probably something else going on, but no one seemed to do anything - I don't think they knew what to do, who to refer to, where to send me. That was, until a registrar brought up mitochondrial disease in a routine appointment and my consultant referred me to the NHS National Rare Mitochondrial Disease Service, based at the NHNN, where I am seen by the incredible Dr Ros Quinlivan. Ros is child and adult trained and so treats children at GOSH and young adults and adults at the NHNN, hence naturally she took over my care when I was referred to the clinic. I saw Ros in 2016 and she ordered a muscle biopsy, a load of tests and wanted to admit me for my first annual "MOT", which took place in July 2017. However the muscle biopsy got cancelled. I had an EMG which showed myopathy and then in the July admission I was found to have reduced lung function and capacity, and a weak/ineffective cough, so I was put on saline nebulisers to help loosen secretions and then a Lung Volume Recruitment (LVR - like a manual cough assist that uses breath stacking) to clear my chest, which has worked as I've had no chest infections since starting this regime. I saw a range of different professionals and fortunately my heart is okay at the moment, I was saturating okay with elevated CO2 at night but not high enough to warrant any ventilation (yay) so that was good, and lots of other tests and things. I had my bloods taken to have my genome sequenced by the 100,000 Genomes Project which, in conjunction with the muscle biopsy, we hope will lead to a diagnosis. Ros thinks it could be a rare Mitochondrial Disease or another progressive muscle-wasting disease, her words being "probably rare, ultra rare or even unique". So, tomorrow I am admitted and whilst inpatient this time I will have my long-awaited muscle biopsy. The results will take a minimum of around 6 months, but could take up to a year or more (*I’ve since been told they could be back sooner than that*). I really hope we get a diagnosis, a name/a gene, even though getting a diagnosis won't change my treatment, we know that. We may never get a diagnosis, but at least we're trying with the fantastic help of Ros, the NMCCC and their teams.
However, whilst I want a diagnosis for myself, I also want a diagnosis so that my sister, Vicky is who is 27 (28 in July) can be tested to see if she is a carrier of the condition and if so, be counselled on the likelihood of passing the condition or carrying the condition onto her children and even have IVF with Pre-implantation genetic diagnosis (PIGD) to screen the embryos for the mutation and only implant the embryo(s) without the mutation, preventing the inheritance of the condition, thus meaning my sister’s future child(ren) would be unaffected. This is a huge driving force for me. I don't want my sister to have children like me, and to go through what mum's gone through. Vicky has suffered enough as a result of my illness, it affects her deeply and means she feels left out as mum isn't able to devote the unlimited time to her as she has to be on-call and available to help me - even with the 24 hour care, which isn't enough, as I need 2:1 care during the day but mum has to be on call regardless - so Vicky doesn't get the time with mum that she needs, wants and deserves. She also often gets forgotten - people ask after mum and me but don't always ask about Vic. She has suffered so much and I recognise that, it is hard for her. So, much as my illness and my life has taken a lot away from Vicky, I hope this gift of a diagnosis and a gene - if possible - that she can be counselled, tested and take measures to prevent her children inheriting it, that will be my gift and my legacy to Vicky. I can't give her what she needs, I can't change the situation, I can't make things right, but I hope I can somehow make the future better for her by *potentially* preventing my illness being passed on, if Vicky was a carrier for the mutation.”

There’s a big change the biopsy won’t lead to answers, it could do but it might not. I just hope it might aid in the diagnosis in some way. 

I am just so glad the biopsy is over and done with. Here’s to moving onwards with the diagnostic process. I am already on the 100,000 Genomes Project to have my genome sequenced, which may also lead to a diagnosis, but may not. I just hope beyond hope I will eventually know what is wrong with me. It’s so hard when you’ve spent a childhood with undiagnosed problems, to get a diagnosis at the age of 15, to then find after 8 years that what you thought was wrong with you, likely wasn’t, and then spend 2 years (thus far) not knowing what is wrong with you again. It’s hard not having a name or a cause, knowing there’s something wrong but no one knowing what. I do hope that I may get a diagnosis - even if it is rare, ultra rare or unique as Ros said, so much so it may not have a name - it’d just be good to know and possibly be able to take steps to ensure Vicky’s future child(ren) don’t inherit the condition. Fingers crossed!

Here's my thank you to the NMCCC, Dr Quinlivan and Dr Khan. 






Friday, 23 February 2018

To Friendship & A Collaborative Partnership; My Meeting with Dr Tedros, Director General of the World Health Organisation


Today I had the greatest pleasure of a personal meeting with Dr Tedros, Director General of the World Health Organisation (WHO) regarding my palliative care advocacy work and ensuring that palliative care gets included in universal health coverage packages. The meeting was more a meet/greet, a get to know each other meeting but we had a great conversation around palliative care, the current landscape, about universal health coverage, about access to medications and about how fortunate I am to live in the UK with our National Health Service (NHS), access to palliative care and hospice services and access to essential medications we require such as opioid analgesics to manage severe pain, for both adults and children. 


Dr Tedros shed a tear when describing the impact my words had on him when read out by Dr Stephen Connor at the WHO Executive Board, and also the impact of my life, my work, my humility, my gratefulness and my determination to make a difference for others on him and his understanding of what really matters through stories such as my own. He called me an inspiration, to him and to others, and praised my humility and that appreciation for life, he said that most of the world’s greatest issues and conflicts would be resolved if we all came together and if we all saw life through my eyes and others like me, how I see the world and my appreciation for everything I have. We discussed the great things that can occur when we work together. He was extremely complimentary and grateful for the work I do. He said my words, my story and my work has touched him and he has great admiration and respect for me and the work I do and how I overcome a lot of challenges to do what I do, but I do not let this limit me. I was moved by his words, given the position he is in, a real distinguished individual, so it meant a lot to me. I am just truly privileged to live the life I do and to have the opportunities I have, such as this. 

We talked about palliative care and its availability around the world and about ensuring it is included in universal health coverage (UHC) packages. I didn’t need to tell Dr Tedros how vital it was; he, in fact, said this to me, showing his understanding of its vitality and his commitment to doing something about it. He  said about working together to improve access, we both discussed the sharing of stories as being huge drivers for change and I discussed he international direct stakeholder network I set up, Palliative Care Voices, which he was very appreciative of and hopes to be able to utilise the stories of the people through our network to help governments, high-ranking officials and all those in politics and in power around the globe to see the true benefit of palliative care and why universal health coverage, inclusive of palliative care, is a vital part of any society. I said how wonderful it is that my story can show the true benefit of palliative care, as well as an example of having an UHC package in the form of our National Health Service (NHS) done well and the benefit of having access to palliative care and hospice services and to medications such as opioid analgesics to manage severe pain. I hope my story can be a beacon of light in that sense, to help those in power to understand why palliative care is essential and what it can look like when done successfully. I know the setup in the UK that I benefit from can’t always be replicated everywhere at this time, however I do hope working with the World Health Organisation and Dr Tedros, we can show the human benefit as well as the financial benefit - receiving palliative care in my case has undoubtedly saved the NHS money by preventing unnecessary admissions, enabling me to be cared for at home, managing my symptoms effectively and reducing the number of professionals I need to see. Dr Tedros agreed that my case is an example of palliative care and universal health coverage done well. We both did agree it isn’t perfect and that nothing ever will be perfect, but I am a success story for palliative care as part of UHC. I said I don’t know what I’d do - or if I’d even be alive - if I lived in a lower or middle income country and didn’t have access to the NHS, palliative care, the medications I require and to round the clock care. I said how some of my friends are making sacrifices in order to get the care they require; face financial ruin and have the care they need or go without and suffer unbearably, ending in a ‘bad death’. Dr Tedros also shared stories that have touched him over the years, too. We both agreed that universal health coverage isn’t universal health coverage without palliative care. We also touched on access to medications for both adults and children. 


He referred to me as a friend, a friend he will work together with to improve access to palliative care and universal health coverage. He explained my name in Ethiopian, Dinkinesh, which means precious. It was a very moving meeting, I was touched by Dr Tedros’ appreciation for me and my work, his kindness and compassion, his understanding of my work and his desire to work with me. He moved me with the things he said, especially since they are being said by the WHO Director General, no less. For someone to understand me so deeply when he’s only just met me - we both said it was like we’d known each other a very long time. Like old friends. He was also very complimentary and appreciative of my mum - he asked where I get my strength from, and I pointed at mum - and he said how he is honoured to meet us. We are extremely honoured to meet him! And to be called a friend - well, that has just made my day. 


A handshake and a kiss on each cheek was the goodbye of this meeting, but signified the start of a beautiful friendship and collaborative partnership. A team, who will work together to affect change around the world. How truly privileged I am to be in this situation, to have this connection. I have offered my support to Dr Tedros in any way he would like my assistance with and I know for sure that we will be collaborating for years to come. 

I am truly privileged to live this life, to have these opportunities and be able to affect change. I may have a life-limiting condition but I refuse to be limited by it. I am truly blessed to be in the position I am and I hope to give others the opportunities I have been given, through Palliative Care Voices and through the charity I am setting up separately to this. I want others to have the opportunities and experiences I have had. My work is not about me, it is about others, making a change for others, constructively using my experiences to benefit them, ensuring they have a better life with all the support they require, but also empowering and supporting them to become advocates too. I hope I will achieve this.  


Thank you, Tedros. I cannot put into words how grateful I am. Here’s to a great friendship and to future collaborations. 






Wednesday, 31 January 2018

My call with Dr Tedros, Director General of the World Health Organisation


Last week, it was the World Health Organisation (WHO) Executive Board. The WHO is an international organisation who direct and coordinate international health within the United Nations’ system. The Worldwide Hospice Palliative Care Alliance (WHPCA) and International Association for Hospice and Palliative Care (IAHPC) amongst other organisations sent speakers to the Executive Board. I, along with two other palliative care direct stakeholders, Huyaam Samuels and Sharon Thompson, sent messages to be read by palliative care advocates attending the meeting. Our words had a huge impact on all those present, and this shows how important it is to get our voices into global discussions about our healthcare. It was fantastic to have the direct stakeholder voice included at such an important high-level meeting. Dr Tedros, the Director General of the WHO, picked up on something in my message and requested to be put in contact with me through Stephen Connor, who read my statement at the Executive Board meeting. Dr Tedros asked to speak with me directly. I was passed his details and planned out when best to call.

That telephone call took place yesterday afternoon, Tuesday 30th January 2018. I felt it was a great success. I shared my story and the points important to me and other direct palliative care stakeholders to be met with gratitude, respect and kindness from Dr Tedros, who I could tell valued the opportunity to speak with me as much as I valued the opportunity to speak with him. I shared my story, in brief, sharing who I am, my life with my illness, and the benefit of living in a country with universal health coverage in the form of our amazing National Health Service (NHS) which includes palliative care, having access to the medications such as opioid analgesics in forms that I’m able to absorb since taking tablets or liquid medication that are oral or enteral in form is futile due to intestinal failure, and having a state-funded care package that enables me to live at home. I explained how palliative care has transformed my life, giving me a far superior quality of life than anyone could’ve predicted and has also supported my mother and my sister and wider family. Dr Tedros appreciated the impact of palliative care not just for me, but for mum too; as you all know, mum was formerly my full time carer until she developed a brain tumour and suffered a post-operative stroke and subsequently developed epilepsy, although she now provides some of my care again, providing the double-up care alongside my intensive care nurses. 

I also discussed how palliative care has enabled me to go on and be a voice for others, to work with charities and organisations and to become an advocate for people in similar situations to myself, for which I received my MBE in 2016, aged only 22, for services to young people with disabilities. He said I am a true leader and a champion for others, which I greatly appreciate, as well as expressing pride for my achievements. 

This led onto me discussing the international direct stakeholder network I set up, Palliative Care Voices, which gives direct palliative care stakeholders like myself, that is people with life-limiting conditions and their carers and families, the platform and opportunity to speak up and contribute to global palliative care advocacy. Dr Tedros said how important it is to hear from people like myself who require and benefit from these services. 

I explained how vital it is that people like myself have access to the palliative care we desperately need and will benefit from. I am incredibly fortunate in a rich, developed country with universal health coverage from our NHS, access to the palliative I require from community palliative care services, a young adult hospice and when in hospital, as well as access to medications to manage my distressing symptoms such as pain. My care is a shining example of the benefit of palliative care as part of a universal health coverage package, how well it works, the benefits and the cost savings to the government and I explained how it’s good to have a benchmark, a successful case study to work from and attempt to replicate. I said that I didn’t know what I’d do if I lived in a lower or middle income country where there is little to no access to palliative care, poor access to medications such as pain relief and not the funds or resources in many of these countries to rectify this and to replicate the fantastic care I receive in the UK. I understand that my experience is not common outside of the UK, and how scarce palliative care is around the world, particularly in lower and middle income countries. The lack of palliative care services around the world and the lack of inclusion of palliative care in the universal health coverage agenda is something I am keen to tackle through my direct relationship with Dr Tedros. 

Dr Tedros also mentioned it being the 70th anniversary of the creation of our NHS this year and said how he wished that the NHS70 campaign - of which I’ve played a small part - would share their learning and success story with other country and organisations such as the World Health Organisation for it to be understood and potentially be replicated in other countries in future. 

Dr Tedros has asked that I meet with him next time he is in London. He wants to hear my story in more detail when we meet as well as to discuss how we can move this forward, in his words, ‘together’. He has said he would like to work together to improve the inclusion of palliative care in universal health coverage packages and to improve access to palliative care for people like myself. I appreciate his use of the word together; I truly believe he will work with me to create the necessary change and through the use of my story as a successful case and benchmark, as well as the needs and experiences of those in lower and middle income countries who need and will benefit from palliative care, that we can reach these political members of state to show the real benefit and need for palliative care and how vital palliative care is and how it must be included in universal health coverage packages. I understand that my story represents the benefit of the success of access to, availability of and of the government funding for palliative care and access to medications and I fully appreciate the access to palliative care and medications I receive through living in the UK and the funding of these services are simply not possible in most countries, especially lower and middle income countries. Crucially I will be sharing the voices of others about what is possible in different settings around the world and enabling voices to be heard. 

In preparation for meeting with Dr Tedros, I will be consulting with the direct stakeholder network Palliative Care Voices that I created to secure the experiences and views of fellow direct stakeholders around the world, including those in lower and middle income countries, to inform me and to enable the input of their voice, experiences, thoughts and feelings onto my meeting with Dr Tedros. I will take with me the voices and experiences of direct stakeholders, including Huyaam and Sharon mentioned earlier who also had their words spoken at the Executive Board, and ensure that it’s not just my voice he hears, but the voices of many.

For me, this is an opportunity to affect change at the very top level. It means I can take with me to the meeting with Dr Tedros the experiences of direct palliative care stakeholders around the world. I am truly humbled that he has taken time out to speak with me and will meet with me. He expressed a wish to work closely with me and to keep in touch and I intend to support Dr Tedros in his work, to advise and inform and to work with him towards a brighter future. 

What an opportunity. I am truly privileged. I do hope this will be the start of something amazing in the palliative care world, that I can truly make a difference at the highest level through this relationship with Dr Tedros. The telephone call was a milestone for me in that I was speaking to the Dr Tedros, WHO Director General, but also that I was talking to someone who treated me as if I was the most important person in the call. His kindness and appreciation for my work and expressed pride at my achievements has been heartwarming. I do hope this will be the start of something great, not for me, not for Dr Tedros, but for the world itself. 

Thank you, Dr Tedros. Here’s to a successful meeting when you are next here in London and to working together to get palliative care the recognition and investment it needs and to enlighten the top political leaders to see the human benefit of palliative care. I extend my eternal gratitude for speaking with me, treating me with such kindness and respect, for valuing my input and for any opportunity to work in partnership with you. 

Below is the video showing Dr Stephen Connor, Executive Director of the Worldwide Hospice Palliative Care Alliance (WHPCA), reading my words at the WHO Executive Board.



I’m a direct palliative care stakeholder consultant for the WHPCA, part of the role being to set up the Palliative Care Voices network. In addition to my work with the WHPCA, I also work with other palliative care charities: Together for Short Lives and Hospice UK in the United Kingdom and the International Children’s Palliative Care Network (ICPCN). 



Saturday, 30 December 2017

Another Year Over, A New One (almost) Begun - Reflecting on 2017


2017 has been an incredible year, I feel truly privileged for all the opportunities I’ve received, all the new roles and projects, all the experiences, places I’ve been, things I’ve done, people I’ve met. This year Molly and I started to give demonstrations in aid of Dog A.I.D. too, having given 4 formal demonstration this year. It’s been a massive year for me, the list of things I’ve done hundreds and hundreds of things this year, some big, many small, but nonetheless that I’ve given my time and energy to. I feel proud of what I’ve achieved. Proud of myself? Well, that’s a work in progress, I struggle to feel proud of myself instead always seeing where I could’ve been better, done more, work harder, achieved further but that’s me, I just am trying to find a way to be proud of myself and content with my achievements as they are, without always focusing on what I haven’t done or could’ve done better. I need to learn to appreciate the multitude and magnitude of all I’ve done up to this point. Hopefully next year I’ll be better at it! It’s just been an amazing year. Thank you to everyone who has played their part, no matter how big or small, you’ve helped me to move forwards into what is an uncertain future. 

I feel blessed to have all the opportunities I have, all the people in my life, including my amazing family, to have all the things I need to survive thanks to our NHS and to have Molly, my ever-faithful Assistance Dog, companion and friend. I have a lot of struggles, negatives, suffering, upset, trials, challenges, hurdles to overcome and losses in my life, but I choose instead to focus on the plentiful positives of and in my life.

2017 has been amazing. I’ve had a great year in many ways. I have met friends I’ve known for years but never met in person until this year, I’ve made new friends, I’ve spent quality time with family in ways we haven’t been able to in the 10 years I’ve been poorly. I’ve achieved things and become involved with things beyond my dreams. I’m pursuing a project of my own that’s been in the planning for a very long time. I’m living a life I can be proud of, a life worth living. 

So, here’s a summary of a successful, jam-packed year. Brace yourself. It’s quite a ride. Also, this isn’t all I’ve done this year, either - it’s a "I’m trying to be brief" summary so a lot of things are omitted. 

I thought I’d start by sharing the demonstrations Molly and I started giving this year, with 4 formal demonstrations given. As a result of this and of other donations our total raised for Dog A.I.D. in 2017 is £1500. It’s amazing to give back to a charity that’s given me so much. 

January 2017

We started off the year with me writing a piece for Muscular Dystrophy UK Trailblazers, after which I’ve written a few blogs now. I also became a Huffington Post blogger in February, writing a few blogs, including my first one which was Assistance Dogs and Access Refusals (read it here). 

The major thing in January was the announcement of Molly’s “animal OBE”, the PDSA Order of Merit (after receiving it a few months earlier). We appeared, in photos in a tiny segment on Good Morning Britain the day it was announced, whilst I was at an appointment and we got back from London from the hospital before heading up to BBC Essex to appear on the Dave Monk Show regarding the award. Molly appeared in the Metro, Dogs Today Magazine and the Echo, and on various websites including the Daily Mail, the Mirror, The Times, Closer online, K9 Magazine, BT’s website and others. I then launched the www.lucyandmolly.co.uk website. You can read my blog about it here and on the PDSA website here and watch the video on YouTube below.



Also in January I attended the Dying Matters launch event, I wrote another blog for Muscular Dystrophy UK, ehospice shared about Molly’s award and the Open University Sexuality Alliance posted a blog of mine.

February 2017

February was a great month. I became a Huffington Post blogger, I attended a meeting and wrote a piece to go in a book on Ehlers-Danlos Syndrome and worked on the Pseudo Obstruction Research Trust’s website and started working on a project for PORT. 
Two big events took place in February. 

On the 7th February we attended the House of Commons for a Together for Short Lives reception. It was our third trip to Parliament for Together for Short Lives, but the first since Molly qualified as my Assistance Dog, so it was her first time there. She even got her own dedicated invitation! We had a fantastic night, it was a fantastic event, I got to meet Leah (if you don’t follow her blog then you should - go to shouldhavebeenamermaid.com), and my friend Junior who I’ve worked with virtually loads but hadn’t met him until that day. It was a great event that signalled the launch of the “Lift the baby benefit bar” campaign and the continuation of the "Here For The 49,000" campaign and the launch of the All Party Parliamentary Group (APPG) on Children Who Need Palliative Care. You can read about the event in my blog here . I also got to meet a hero of mine, the incredible lady that is Baroness Campbell of Surbiton (or as she once said to someone that just calling her Jane would be fine). Jane is an incredible woman, a woman with Spinal Muscular Atrophy who has done such great work, especially in the field of disability; she was instrumental in the campaigning for the Disability Discrimination Act which was finally enacted in 1995 and the Community Care (Direct Payments) Act 1996, she’d worked hard in various disability organisations, she was a commissioner for the Disability Rights Commission and then the Equality and Human Rights Commission, she was the founding chair of Social Care Institute for Excellence (SCIE - pronounced Sky), she co-founded Not Dead Yet UK, she protested and campaigned against the closure of the Independent Living Fund (ILF) and was appointed a Life Peer as a Crossbencher in the House of Lords in recognition for her outstanding work. I only briefly spoke to her but that made my day. She told me not to give up and to ensure it was me and my disabled peers leading things, not professionals leading things on our behalf. I promised her I would. This was another inspiration to continue to make my project come to fruition, which I’m still working on now, I hope to launch it in 2018.


Myself, Junior and Leah
On the 22nd February Molly and I attended the RISE4Disability event in Peterborough, at which Molly and I gave our first formal demonstration and where I also gave a speech about my life and work. We had a fantastic day there, the demo went really well and was very well received and we had a great time. I also nominated Together for Short Lives to be RISE’s charity beneficiary for the event which was great, they received £500. I got to meet some online friends there too, including Jo Southall who runs JB Occupational Therapy. She has Ehlers-Danlos Syndrome and uses a wheelchair and is also a qualified Occupational Therapist. She’s amazing, so do check out her website here. You can watch the demonstration Molly and I gave on YouTube here.

March 2017 

In March I participated in various things, for various different charities/projects, including attending an event for Muscular Dystrophy UK Trailblazers, designing the Pseudo Obstruction Research Trust (PORT) charity banners, attending an event at Ford Dagenham for PORT and also Molly and I gave a talk and demonstration at the Rayleigh Trefoil Guild, who decided to raise money for Dog A.I.D. as a result; they raised £350 over 2017. 



April 2017

In April I wrote a piece for the Inside Palliative Care newsletter about the Open University Sexuality Alliance, I continued supporting Dr Adam Farmer’s EVASION-CIPO project, reviewing the patient-facing literature and participating in a Skype call and I continued working on the PORT website. 

Then disaster struck; my Hickman Line burst, necessitating being admitted to hospital and having a procedure to insert a new line, which is quite hard due to scar tissue in my jugular vein from all the lines I’ve had. Luckily, thanks to my absolutely amazing nutrition team and the Interventional Radiology team pulling out all the stops, I received my new line just 24 hours after I arrived at the Royal London and so was able to go home 2 hours after the procedure. However, all was not good and sadly this line was extremely positional - unless I laid completely still in bed, didn’t move, didn’t lift my neck off the pillow and didn’t breathe deeply or move my arm, the line wouldn’t work. This meant I couldn’t have my TPN as it was alarming every 2 seconds with even a slight movement. So I had to have another new line. Unfortunately, this insertion proved extremely difficult due to the amount of scar tissue, and ended up being a very long, painful and traumatic procedure (I have them done awake with local anaesthetic, which wears off extremely quickly for me) and I was very, very bruised and in excruciating pain afterwards (compared to normally coming out of a line insertion a bit tight and sore but not in pain). I was sent home 15 minutes after the procedure direct from IR and the ride home was horrendous - but at least the line was working. 

May 2017

In May I was on the panel reviewing the Together for Short Lives Transition Awards grants, reviewing 12 projects and then participating in the deliberation meeting to decide the shortlist. I wrote another blog for HuffPost called “Dying Matters For Everyone: Dying Matters Awareness Week” (read it here), Molly and I appeared in the Pets at Home My VIP magazine, and I wrote a piece for Together for Short Lives on my end of life planning for a research project. 

Also in May, I was privileged to attend Badminton Horse Trials courtesy of a wish granted by the Willberry Wonder Pony charity (a “Willberry Wish”). Willberry Wonder Pony was a charity started by the late, great Hannah Francis, a teenager who had bone cancer and was a keen eventer (a horse rider who competes with their horse in the equestrian version of the triathlon, known as “eventing”) who mobilised the entire equestrian world and who had her bucket list fulfilled and supported by everyone in the horse world. She then decided she wanted to set up a charity to do two things: one, to raise money to fund bone cancer research, and two to fulfil ‘horsey’ wishes for people with serious illnesses. They paid for us to attend Badminton Horse Trials on cross country day, as well as to attend the exclusive press briefing following the cross country and to meet the world number 1 rider, Michael Jung. It was an amazing day, more than I could’ve ever dreamed of, an item ticked off the bucket list and precious memories that will forever be with me. It has been a dream to go since I was 7, I’ve watched Badminton on the telly every year since I was 7 wishing to be there; and the Willberry Wonder Pony team made it happen for me. It was also a privilege to meet Hannah’s mum and to hold the original Willberry, who was with Hannah throughout her treatment as her “Chief Chemo Pony”. I also wrote a blog about our day at Badminton for their website. You can read that here.  




We also had a trip to London on the 22nd May, which was made possible by Stephen, a volunteer driver at The J’s Hospice, who drove us up to London and took us round for the day. We went onto the Emirates Cable Cars, on the Thames Clipper numerous times, we went up the Shard, then back on a Clipper, up to the London Eye, before catching the Clipper back down to Greenwich Peninsula to get to our car and come home. We had a fantastic day, doing things we’ve wanted to do in a long time and getting lots of great photos and precious memories to treasure. 






June 2017

In June I contributed to a survey for a piece of research, I attended the Big Bowel Event in Birmingham on behalf of PORT, I participated in a Skype conference (as we do every few months) for the Open University Sexuality Alliance and attended a meeting for the Hospice UK People in Partnership Group, of which I am a member. Also, I was invited to sit on the NHS England Children with Complex Needs and Special Educational Needs & Disability Board (CCN SEND). 

July 2017

In July Molly, Mum and I with some friends participated in the Twilight Colourthon, a 10km fundraising walk around Southend, in aid of the Pseudo Obstruction Research Trust (PORT), raising £1257. You can watch a video about that here. I also had some events planned that I had to miss due to my admission to the Neuromuscular Complex Care Centre (NMCCC) at the National Hospital for Neurology and Neurosurgery for my first neuromuscular “M.O.T”, under Dr Ros Quinlivan, where I had various tests and new management plans and at which it was hoped I would have my muscle biopsy but sadly it got cancelled - and as yet, has still not taken place. 

However, for one of the events I missed, at which I was supposed to give a speech, I created a video that could be played instead, which has proved very popular even outside of the event itself. You can watch the video here.

During the NMCCC admission, blood was taken from my Hickman Line and the line wasn’t flushed properly afterwards so it blocked. The nurses used an empty syringe to force the blockage, which we later found out had weakened the line to such a point that less than a week after coming home from the NMCCC, when my nurse flushed the line, it burst completely, under the skin of my chest where the line is tunnelled. I had to go back to hospital - I can’t manage without 2 points of intravenous access at all times - and then a new line was placed, once again a struggle to put in and I was told no more lines will be able to be put in the right side of my neck, but I have the new line and it’s working well. I wrote a blog post about Charlie Gard at the end of July and you can read this here

August 2017

In August my Charlie Gard blog post was republished on the international children’s section of the ehospice website (click here to see it) as well as translated Italian for an organisations’s website and social media. My Dying Matters Caring About Carers video was published on ehospice, I was invited to attend the next Patient Partnership Panel for the British Medical Journal (BMJ) in October and asked to write for the BMJ blog and I appeared very briefly on BBC Radio Ulster about digital legacies. From the 6th to the 12th August it was International Assistance Dog Week. I had planned a week of videos and activity to celebrate IADW and raise awareness of Assistance Dogs and of Dog A.I.D., who helped me to train Molly to become my Assistance Dog. I produced a video for each day, wrote some blogs, we featured in the local Echo and I also published a blog on HuffPost called “Dogs That Open Doors” (read it here).  

Molly and I appeared on appeared on BBC Essex on the Ronnie Barbour show talking about Assistance Dogs and Assistance Dog Week and shared our story as well as touching on disability, my MBE, my condition/Charlie Gard/Mitochondrial Disease and other topics briefly. Listen to that appearance (with subtitles) in the video below. 



September 2017

In September I attended the next RISE4Disability event, this time in Maidstone, where Molly and I gave another demonstration, again it was well received. Unbeknownst to us, our Dog A.I.D. Trainer Midge was at the event and she assessed us whilst there, signing off our annual reassessment, which was fantastic. I didn’t know she was assessing us either! Which made it even more special. It was a great event, RISE. 



I gave a speech for Total Voice Northamptonshire at their advocacy event, on my experiences of advocacy. I was told it made a huge impact, reducing some to tears, including a commissioner who didn’t realise how vital advocacy services are - including for people like me who have capacity and no mental health conditions who currently don’t qualify for statutory-funded advocacy services. It was a great event. 




I became a part of Living Life To The Fullest as a Lead Co-Researcher, a research project which seeks to forge new understandings of the lives, hopes, desires and contributions of children and young people with ‘life-limiting’ or ‘life-threatening’ impairments (LL/LTIs). It’s a privilege to be a part of it.

I wrote a blog for the Huffington Post’s Life Less Ordinary series, titled “Planning For The End Of My Life, Aged Just 17, Made Me Live A Life That Ensured I Wasn't Forgotten”, which you can read here. This was translated into different languages for various HuffPost editions. 

A lady called Claire Morris visited me to chat to me about my work and to get to know me and to also discuss a project the Worldwide Hospice Palliative Care Alliance (WHPCA) were in the process of setting up and asking if I’d be involved as a consultant. I also appeared in a provocation piece Claire wrote, “Who Speaks For Who?” on Palliative Care advocacy which you can read here.

I attended meetings for the Pseudo Obstruction Research Trust (PORT), I had many phone calls and some Skype calls and various other commitments, and I participated in quite a few TweetChats (formal, guided hour-long discussions on a topic on Twitter, which anyone can participate in). 

October 2017

October was yet another busy month. I participated in more TweetChats, Molly and I appeared in a paper and presentation, I commented on some pieces, participated in an Open University Sexuality Alliance Skype conference, I created a video which was used by the Worldwide Hospice Palliative Care Alliance (WHPCA) for World Hospice & Palliative Care Day and I did a social media takeover for Rare Revolution Magazine. 

On the 17th October I went to my first NHS England Children with Complex Needs and Special Educational Needs and Disability (CCN SEND) Board meeting, which was great. Then on the 19th October I attended my first British Medical Journal (BMJ) Patient Partnership panel meeting and was asked to become a permanent member. Molly and I went to the Lions of Leigh to give a demonstration and talk about Dog A.I.D., for which I received £50 and then the Lions donated a further £1000. 

November 2017

November was also an extremely busy month (aren’t they all!?). I began my paid role as a consultant for the Worldwide Hospice Palliative Care Alliance Direct Stakeholder Engagement in Palliative Care Advocacy project (read about it here). My Q&A blog around transition and young adult care was posted on ehospice (read it hereand liaised with people about various projects. I was also invited to sit on two Together for Short Lives Transition Taskforce Regional Action Groups. I started supporting someone with their research and discussed another potential project with someone I know. Then some very big things occurred. 

On Wednesday 8th November I attended a Hospice UK People in Partnership group meeting. I was able to share with them the WHPCA project, with great interest. 

On Friday 10th November I was invited to speak alongside Kath Evans and Amy Frounks at the Queen’s Nursing Institute Transition of Care Conference. The speech was very well received and I had a fantastic day, networking, learning about all the fantastic work going on and seeing old friends and meeting new ones. You can read my blog about the event here, read about the conference here and find out more about the QNI’s Transition of Care project on their website here



Amy, Hannah and Molly and I
Molly and I with Kath Evans
On Friday 17th November I founded and set up the Palliative Care Voices network as part of the WHPCA Direct Stakeholder project. Palliative Care Voices is a network of direct stakeholders (people using Palliative Care services or with a life-limiting condition) and indirect stakeholders (their carers/families) coming together and having the platform to contribute to global Palliative Care advocacy. If you are a Palliative Care recipient or someone with a life-limiting illness or you are a carer of someone who is, do join our network. The private group on Facebook can be accessed hereEven if you don’t meet the criteria, do like our public Facebook page fb.me/palliativecarevoices or follow our Twitter @PallCareVoices
On Thursday 23rd November I attended and spoke at the Patient Leadership Workshop Event run by Health Education East of England, East of England Leadership Academy and the Eastern Health Academic Science Network. It was a great success. I met so many amazing people and contributed a lot to the event. You can see a video about the event here, hear about the event here and see the images created by Graham Ogilvie, summarising the key points of the event, here. You can also read my blog about the day here





On Wednesday 29th November I travelled up to the BBC to record a BBC Radio 4 programme called “We Need To Talk About Death”. The programme is hosted by Dame Joan Bakewell, and I participated live in the studio with James Norris of the Digital Legacy Association and Elaine Kasket (learn more about Elaine here and about some of her work here). The programme was all about digital legacies and digital assets. Also participating, via pre-recorded pieces, was Dr Mark Taubert (a Palliative Care consultant at Velindre NHS Trust) and some patients, as well as my friend Chelsea Corbett, and others. You can listen to it here




December 2017

December was a quieter month in some respects but still extremely busy. 

Maddie Blackburn, Chair of the Open University Sexuality Alliance came over and we had a Skype call with Dr Sarah Earle whilst she was here. We had a very productive afternoon.

Friday 1st December I also found out I am a Queen’s Young Leaders Highly Commended Runner-Up for 2018. You can find out more about the QYL here and see me under the runner's up tab for the United Kingdom here. Whilst I didn’t win the award, I get a fantastic personal development programme which will help me grow and improve and hopefully help me launch my project.  

I had numerous phone calls, Skype conferences. I also met a truly inspirational lady, Shelley Simmonds, whose son Fraser has a rare form of Duchenne Muscular Dystrophy - rare in that most Duchenne boys will walk up until the age of around 10/11, but Fraser, 4, has never been able to walk. I came across Shelley and Fraser as they were fundraising for a wheelchair and having fundraised myself, I put them in touch with Wipe Away Those Tears who paid half the cost (as the Simmonds and friends and the community had already raised half the total cost). Shelley came over on the 6th December and we talked till fairly late, it was as if we’d known each other for years, we didn’t feel like we’d only just met. We had the most amazing conversation. We’re up for collaborating, both being active advocates for disability and illnesses so I look forward to that. More than anything, though, is that I’ve gained a great friend and an ‘adopted’ sister. It’s wonderful. I suggest you, my followers, check out Fraser & Friends on Facebook, which you can access by clicking here, but also check out Shelley’s amazing feet of climbing Mount Snowdon with 4 year old Fraser on her back, giving him an experience he would never otherwise get and raising a huge amount of money in the process - you can read about it here. Shelley was also an award winner at the recent Pride of Essex Awards.


Molly, Shelley and I
On the 10th December I launched my Palliative Care As A Human Right Video, which is a great resource for lectures, workshops, meetings, conferences and lessons. It’s freely available on YouTube. I hope to develop some educational resources to use alongside this, to create a full educational resource on Palliative Care as a Human Right. You can watch the video below.

 


On the 12th December I released my Palliative Care and Universal Health Coverage Video - watch it here

From the 11th to the 15th December I curated the @NHS Twitter account. I had an enormously successful week, reaching 1.1 million people with my tweets, lots of engagement and fantastic conversations. I had a different theme for each day: 
  • Monday was about Patient Leadership and patient involvement;
  • Tuesday was about Young Adult Care and experience and about Transition; 
  • Wednesday was all about Personal Health Budgets (PHBs) - a topical first for the @NHS account, no one else had covered PHBs before; 
  • Thursday was about Palliative Care and Life-Limiting Conditions;
  • Friday was about long term conditions and complex needs including self-care, resilience, coproduction, mental health and other related topics.
Throughout the week each day the followers chose a task to see Molly perform via a poll, which was posted at the end of each day. This proved very popular. The week was a great success and thoroughly enjoyable but busy and exhausting. I’m just so glad I had the opportunity to curate it, what an experience and opening up my life and my work with a new audience too. You can read about my curation here

On the 19th December I attended the Transition Taskforce East of England Regional Action Group (RAG), held at an East Anglia Children’s Hospices (EACH) Hospice in Milton. Together for Short Lives set up the Transition Taskforce and these are run by the hospice members within each region for their dedicated RAG. Not only do I sit on the East of England RAG but I’ve also been asked to sit on the North London RAG too. At the meeting on the 19th I spoke about Patient Leadership and the event I attended on the 23rd November. Whilst there I also met (face to face for the first time, but we’ve been linked on Twitter for a while) Paula Davis, who you may know as the Mum of William in the fantastic series “Born To Be Different”. You may also, if you are aware of Wellchild, know that Paula’s daughter Jessie received a Wellchild Award in 2016. They’re an amazing family, and it was a privilege to meet face-to-face and talk with Paula on the 19th.

Christmas 2017

Then came Christmas, a busy Christmas this year as almost all the family (minus cousin Will) were together at Christmas for the first time in 2 decades. It was myself, Mum, Vicky, Grandma, mum’s brother Nick and wife Louise and my cousin Charlotte (Charlie) and her daughter Eloise, who is 4. We had the most wonderful Christmas together. If only Will had been there - and had Grandad been alive - it would’ve been even more perfect. It was just a very special Christmas, all being together. However, it did make me feel even more sad than usual that Grandad wasn’t here with us, this would’ve made this year to have us all together. I’m also sad he missed seeing my MBE which, as Charlie put it, second to him receiving an MBE himself, me receiving the MBE would’ve made his life. Death is a cruel old thing, it doesn’t discriminate. However my sadness was offset by spending time with everyone and enjoying spending time with Eloise, who was absolutely enamoured with my ‘swing’ (my hoist), fascinated with all my bags and tubes and loved my wheelchair too. Her innocence, and her complete lack of prejudice or preconceived ideas or feelings about disability was so refreshing, she found me being disabled cool thanks to all the things I have and treated me like she did everyone else, it was wonderful, even when I felt poorly and stayed in my room she kept coming out and playing in my room so I wasn’t left out. She’s just the most wonderful little girl, so kind, gentle and caring. I’ll miss her when they fly to Mozambique. I just hope this time, it won’t be another 3 years before we see them again. Christmas this year was about the most important thing time, and that is family and quality time with the ones I love. The best Christmas in a very, very long time. 



Then on Thursday 28th December I appeared very briefly via phone call on BBC Essex as an update to my appearance earlier this year, with Ronnie Barbour, which was lovely. Only a few minutes long. You can listen to it here on iPlayer, it’s 1 hour 22 minutes in.

2017 Summary and Thoughts

So that comprises 2017 in terms of what I’ve done. Considering that isn’t all of it, you can see how busy I’ve been. Not to mention trying to sort out my care package going onto a Personal Health Budget (PHB) so I can manage the package myself, which has involved meetings, interviewing staff, sorting out training and more. Then there’s things I’ve done for pleasure, spending time with family and of course, not included in this summary, is the sheer amount of people I have supported, which I consider a privilege - being the one person people can turn to at times of desperation, feel able to open up about how they feel and feel comfortable sharing their worst moments, thoughts, feelings and experiences with me is a huge privilege. 

I have had a truly amazing year. I feel honoured to have the life I have. Whilst my illnesses are tough and become ever more difficult to manage and overcome, I’m living a life I love. A life beyond my dreams.  

Reflecting on 2017 is not all positivity and happiness, though, as I will now explain why. Living with a progressive, life-limiting and unpredictable condition is always tough. However, out of the three - progressive, life-limiting and unpredictable - I find the progressive aspect the hardest to deal with. They’re all hard to deal with but the progressive aspect of my condition is the worst part, for me personally. The continual loss of abilities, the repetitive cycle of grief, coming to terms with and accepting one thing just as another difficulty crops up and I face another loss; its tough. I struggle. It’s hard enough if your condition is static or if it flares up and down, but losing abilities knowing you’ll never get them back is horrid and distressing. At this time of reflection, as 2017 comes to an end, there is much positivity, but it hurts to look back on the deterioration in this year. It’s then tough to look ahead to the future, when you don’t know how much of a future you’ll have with. Each day is a blessing, we should all live with that understanding, as life is finite, life has a terminal prognosis itself. However, I can’t live one day at a time, which many life-limited people do, they avoid planning ahead for things due to the fear that these plans will not go ahead, to avoid disappointment. I am a driven, self-motivated person who needs things to aim towards, I’m very goal driven, but also a planner by nature. I need structure, organisation, things to aim towards. At first I did want to shy away from planning, but my nature and my work, have taught me that it’s better to plan and face disappointment than to not plan a future at all. So, much as my future is uncertain and every day is a blessing, I push forwards with dreams, goals, aspirations and plans, whether or not they will happen and however long I have left on this planet. As the saying goes, it’s better to love and lose than never to love at all - well, I feel the same about planning ahead; better to make plans and face disappointment, than to never make plans at all. 

What are my hopes for 2018?

Well, I have many. 
Let’s start off with my ‘work’ and ‘doing’ goals:
  • To write my autobiography. 
  • To finish setting up and launch the charity I’ve been working on for a long time.
  • To do more paid work.
  • To get a speaker’s agent and do more speaking.
  • To do more media work.
  • To do more written work.
  • To blog on a regular basis. 
  • To finish off my digital legacy planning & pieces.
  • To raise more money for Dog A.I.D. and give more demonstrations with Molly. 
  • To set up an online school, for online courses on various topics, and to create educational resources and videos, such as my Human Rights Day Video. 

My personal goals:
  • To learn to be proud of myself.
  • To meet more of my online friends in person. 
  • To spend more quality time with family.
  • To take Molly on new walks, explore new places, take lots of photos. 
  • To take Molly to the beach.
  • To develop my photography, practise more, use YouTube tutorials and online resources and maybe do a photography course. 
  • To not work so hard all of the time, to learn that giving 200% 100% of the time is unsustainable. To remind myself that time off is okay and to accept perfection is not real. 
  • To not allow toxic/nasty to upset me or ruin my life and not to give my time and energy to those who are not willing to support me in return or who will not appreciate what I do for them. 
  • To complete my bucket list. 
  • To have more ‘me time’ and downtime. 

My illness-related goals:
  • To get my Personal Health Budget up and running.
  • To manage my back pain better. 
  • To remain sepsis free.
  • To stay out of hospital.
  • To be able to live well and manage things properly as I deteriorate.
  • To learn to deal with the constant loss of abilities. 
  • To try to slow the progression of the muscle atrophy. 
  • To make use of complementary therapies.
Thanks for your continued support. 
Here's to a fantastic 2018!

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