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Sunday, 16 October 2016

Be Your Client's Hero - National Advocacy Conference 2016

On Thursday 13th October I attended the Be A Force For Change - National Advocacy Conference 2016 run by Kate Mercer Training. I delivered the first keynote speech on my experiences with advocacy, titled “Be Your Client’s Hero”. It was a brilliant event, very successful and we had a lovely day there. The speeches and workshops were very interesting and it was lovely to meet so many inspiring people there today. 

Being the first keynote speaker was exciting, and I feel it is the best speech I have given. I really enjoyed it - usually I'm so nervous and anxious to get it right, that I forget to enjoy doing it - and those with me, said it showed on my face and in the way I spoke. I had a fantastic time, I delivered my speech clearly, I got across the points that I wanted to, and I managed to round it up at the end and clearly deliver my message that I wanted people to take away from my speech. Sadly the slides for my presentation wouldn't work, but it didn't detract from my speech at all. I also answered a few questions afterwards. My speech flowed nicely into Steve Broach’s presentation on Human Rights which followed, with a lot of issues faced by myself and which were touched on in my story exemplifying the different acts and laws and how they can be used to meet the needs of the disabled person. It was a fascinating talk and I left with a much greater understanding of the laws, from the Human Rights Act, to the European Convention on Human Rights, to the UN Convention on the Rights of Person's with Disabilities and the Equality Act. I also better under stood key articles within these laws and how they are used to benefit the disabled person.

Here is the video of my speech:

Following my speech, I attended a workshop run by NYAS (the National Youth Advocacy Service) where we talked about social media and then the work of NYAS, advocacy and watched two of their new films. It was very interesting. 

I met so many lovely people at the conference, learnt a lot from the talks, Q&As, workshops and from other people, and I received lots of fantastic feedback about my speech (and also some tweets about it). 

We just had a great day, I do feel it was my best speech and I had a great time. I am so grateful to Kate Mercer for inviting me and asking me to speak, I am so grateful to everyone who has given me an opportunity over the last three and a half years. I was filming all day Tuesday for an NCPC video too, so it's been a busy week! 

Saturday, 8 October 2016

World Hospice & Palliative Care Day 2016 - Living & Dying in Pain: It Doesn't Have To Happen

Today is World Hospice and Palliative Care Day, celebrating supportive/palliative and hospice care around the world. This year's theme is Living And Dying In Pain: It Doesn't Have To Happen. 

Palliative care has been a part of my life since April 2011 when The J's Hospice came on board and my hospice nurse soon had me admitted to hospital and started on Total Parenteral Nutrition, TPN, which saved my life; if I hadn't started TPN when I did, I'd have died within a week. Bev and the hospice saved my life, one I so nearly lost to type 3 intestinal failure caused by Chronic Intestinal Pseudo Obstruction. 

Since then, palliative and hospice care has enriched and enhanced my life. It's brought symptom control, better condition management, a change in care perspective and as a result, improved quality of life. I went from being completely bed bound with no quality, to now getting out with Molly, my assistance dog, every day, going to charity events, giving speeches, achieving and spending quality time with family and friends, including going out for dinner with my family for the first time in nine years. It's all these precious things I owe to palliative care. 

I have been supported by two young adult hospices: The J's Hospice, a hospice at home service in my home county of Essex, and Jacksplace in Winchester, where I had two inpatient respite stays a few years ago; stays which were wonderful and, though I no longer have funding to go since I have a home ITU nurse package, I wouldn't hesitate if I needed to stay there in the future. The J's continue to support me, and I have a palliative care consultant locally as well. 

I live with severe pain, it is something that is a permanent fixture in my life. I'm on high doses of opioid medication (Fentanyl) to control my pain. I also rely on medication to prevent vomiting and alleviate nausea, and have 5 litres of intravenous fluid every day - 4 litres in my TPN feeds, and an extra litre of hartmann's solution - to manage my fluid requirements so that I am not left dehydrated. All of these are administered at home by my ITU nurses who care for me every day from 7am until 11pm, and a carer takes over from 11pm to 7am when the next nurse starts. I have the support of a dedicated young adult hospice, I have all the equipment I need, technology, support and expertise and much as my conditions cause great suffering, I am not left suffering without support or the right medication; my pain is never completely gone, but it is managed to the best of our ability. I have no gastrointestinal absorption, therefore my drugs must be buccal, patch or intravenous, or at a push, subcutaneous or intramuscular but I often get infections and sores from injections. I live in a country where I have access to adequate pain relief and other medications in forms I can absorb the drugs; if oral morphine was all I could have, I'd never get any pain relief. 

I'm very fortunate; I live in a country where pain relief is readily available, in different formulations, routes of administration and is readily available to people of all ages. I live in a country where we have access to a whole range of symptom management drugs. We have dedicated hospices and specialist palliative care consultants and nursing teams, they may not be perfect but we have these services for children, young people, adults and the elderly. We are very fortunate. Many countries have no dedicated hospices, and in many countries pain relief like morphine is not available in paediatric formulations, leaving children suffering unnecessarily, or in forms other than oral for those who may not be able to take medication orally. I wouldn't survive if I lived in a developing country, they don't have the specialist care, treatments, TPN (let alone home TPN) or vital drugs in forms I can absorb. Millions of people around the world are suffering needlessly, with no access to pain relief, palliative care or hospices or support for family members to share the care burden. 

Palliative care is not just about end of life care, it’s about living, too. Living well, symptom control and quality of life as well as end of life care and support to have a good death. In today’s day and age everyone, regardless of age, race, location, religion or language should have access to vital pain relief and symptom relieving medications, to specialist palliative care, and hospices for both children and adults. However there just isn’t the funding, and even hospices in the UK are struggling. This means millions of people -  including children - are suffering needlessly and dying in pain. Living and dying in pain doesn’t have to happen, and that’s the message we want everyone to take away from this year’s World Hospice and Palliative Care Day. 

Here is my video for this year's World Hospice & Palliative Care Day:

Sunday, 2 October 2016

The Gift Of Life

Most of you reading this will know my story, my struggles and my successes. I'm not here to recount them to you. However, it's my 23rd birthday today. Big deal, right? I'm only 23. The thing is, it is a big deal, to us, anyway. 23, when you were given a rubbish prognosis, is a huge thing. It should be celebrated; but I don't just mean celebrate my birthday, I mean celebrate that medical science and the NHS can keep complex and very poorly patients like me alive. THAT is something to be celebrated. Me, well I am not big into birthdays, I measure my life in moments, not years, but I just feel so thankful to be seeing my 23rd birthday. To have achieved another year of life. To have survived, but not just survived, but to have lived, in every sense of the word. I have been through horrific things in my 23 years, things no one should go through, but I have survived and I have stayed focused, positive and not let go of living a life with a purpose. In my mind, I need to look back on my life and know it counted, that something or even a lot of things are better because of me, my life and my legacy and I can be proud of what my life has achieved. Also, to know I won't simply be forgotten, that is also very important to me. I'm not looking to be famous nor do I do anything for recognition, but for the impact of my life to live on in those my life has touched, that's important to me. I want my life, and the suffering within it, to have meant something.

When I was little, I just wanted to be normal, to blend in and be like everyone else so as to not draw attention - I was painfully shy, which might surprise some of you. I always knew I was different, but I didn't have the words to express my suffering, suffering I have lived with from day one, and suffering I did not realise was not normal for my first decade of life. I grew up wanting to be someone, anyone, else. I was not comfortable in myself, and the pain I suffered and the problems I had were something I hated, but stayed silent. I grew up wanting to be a doctor, to help people and make a difference. I wanted to fit in, but I always wanted a purpose in life. I needed my life to mean something. This has never left me. 

Now, I am not an extrovert, but I am comfortable in my own skin. Well, let's rephrase that, I'm not comfortable in my own skin as I'm in pain all the time, but I am comfortable with who I am. I am not ashamed, I do not wish I was someone else, and I don't just want to blend in and be "normal". I want to be extraordinary. To reach out and help. To spread my wings, and to help others do the same. I live a life of purpose, and I am proud of my achievements. I get comments of being an inspiration, and that makes me proud. Why? Because people are appreciating my genuine achievements. I'm not amazing just because I get up every day (though it can feel like an amazing feat some days!), people value all I have achieved, what I do, and the impact I make. This Dr Seuss quote pretty much sums up how I feel - 
"Why fit in when you were born to stand out?" 
Why do we strive to be normal? Why do we always want what someone else has? Why do we try to be like everyone else? I grew up wanting that, but now I enjoy standing out. I have the opportunity, the voice, and the tools to make a difference and impact people and help them. What more could you want than to help others and make things better for them? I go through so much on a daily basis, I suffer greatly, and I struggle and fight for my life every day, but I am content with my life. It's enough for me. I have a limited quality of life, but I make the most of what I have. I don't focus on others and want what they have, I focus on my own and how I can improve it, maximise it and grow as a person. Yes my life is tough, but I am not hard done by, the world owes me nothing, and I am contented. I am happy. And I am fortunate to feel this way. 

I have wonderful friends and family, a large support network, the most amazing consultants and wider medical team and a care package - which unfortunately only came about due to mum's brain tumour and post-op stroke - that allows me to live at home with my family. I am palliative - I have incurable, life-limiting and life-threatening complications of severe and complex conditions - but I still seek active treatment, and we have finally struck the right balance. I have a fantastic GP who prescribes IV antibiotics and other drugs to allow me to stay at home with my ITU nurses caring for me, preventing unnecessary, unwanted and risky hospital admissions. I have consultants who see me as a person first, who excitedly ask about my charity work and who work in tandem with me, listening, appreciating my input and involving me in every decision, outcome and solution. As well as nurses who have become friends. I have a fantastic team around me, medically, familial and friend-wise.

I wake up every day grateful I am still here, but birthdays are a reminder of how far I have come, what I have achieved and that I have lived another year on this beautiful planet. I thank life that I am still here, living, breathing, seeing, hearing and feeling. I may live on a knife-edge, but when you stop and look around, I have a pretty amazing life. I have an awful lot to be thankful for, and I just hope my life will always have a purpose, and that I will live on in the mind and hearts of those whose lives I have touched. 

I'm 23 today, and that's pretty darn amazing. Take the time to appreciate what you have, stop comparing yourselves to others and remember our struggles lead us to our greatest successes. You all have a purpose in life, you just need to find and fulfil it. Never take anything for granted and make sure your loved ones know they're loved, appreciated and cared about. None of us know how long we have left to live; I just have a reason to live for every day and appreciate how short life is. 

Thursday, 11 August 2016

Home Artificial Nutrition Week 2016

Most people have heard of feeding tubes, seeing kids with cancer and other illnesses with a NasoGastric Tube taped to their face. People know it’s possible to be fed through a tube in your nose down into your stomach. However, how many people know you can be fed into the small bowel? Even more so, how many people know you can be fed directly into the bloodstream? Not many. I certainly didn’t know you could be fed into the bloodstream until TPN was urgent and I would die imminently if I wasn’t started on it. It’s Home Artificial Nutrition Week, and so in this post I want to raise awareness of the different types of feeding, to show that a feeding tube is not the end of the world and that we can live full lives in spite of them, but also to raise awareness of the issues surrounding tube feeding. 

I was first put on tube feeds via a NasoGastric Tube in August 2009 at the age of 15. I was unable to swallow, digest or absorb food and so they started me on NG feeds after losing 6 stones in 6 months and only being able to eat one small handful of pieces of carrot cooked to the point of them being devoid of all nutrition each day. I was assured by a paediatrician this was a normal diet for a 15 year old, and his reluctance to accept that this was not a psychological issue delayed support; I only received my NG because I passed a psychiatric evaluation. However, only a week on NG feeds I was discharged home, on a bank holiday weekend, mum having only been shown once how to set up my feed and care for my NG and we were sent home with a pump but no stand or drip pole or rucksack to put it in, leading to us improvising with an umbrella stand, the handle of a broom and a coat hanger on the curtain pole, and no support or rapid access back to the ward in case of difficulty. We were thrown in at the deep end with no support.

Three months later, on the advice of a rheumatologist who photocopied text about Ehlers-Danlos Syndrome causing gut problems out of a medical textbook and put them in my notes, a PEG was placed on the 21st October 2009. I struggled on with PEG feeds from 2009-January 2011, continuously losing weight in that time where I couldn’t tolerate, digest or absorb my feeds, despite going through almost the full range of feeds, different calorie per ml ratios along with copious amounts of polycal and awful shots of calogen which my gut was not happy about at all. We kept pushing and pushing my gut to work, but it only got worse. I was admitted to hospital weighing eight and a half stone in January 2011, and put on PEG/J feeds, feeding directly into the small bowel via a tube that was passed through the PEG into my stomach and threaded down into the small bowel using an endoscope. However, I did not tolerate this method of feeding either. I continued to lose weight, until I dropped to the weight of 7 stone, which is dangerous for someone of 6’1. I had lost 11.5 stones in two years. Not only was I dangerously underweight, I had a heart attack-like episode caused by my body beginning to digest my heart muscle, I had no muscle or fat on my body, my bone marrow was starting to fail, I had blood transfusions and iron infusions and was extremely poorly. It took my hospice nurse, who came on board two weeks earlier, begging my London specialists to admit me before I finally received the nutrition I needed. 

I was placed on TPN on Friday 13th May 2011, and my consultants didn’t know if I’d survive, if my body would tolerate the nutrition and pulled my mum aside to tell her this. Fortunately for us, with careful management and replacement vitamins for imbalances caused by the refeeding process, I tolerated the feed and it keeps me alive to this day. I was in hospital for five weeks whilst they got my TPN prescription right - each patient has a tailor-made feed prescription made to their exact requirements based on blood tests, and their feed is made up to this prescription so they get exactly what they need. I also had to wait for the local CCG to agree funding, which took a while, as well as to organise with the homecare company for the delivery of the medical fridge, supplies and equipment necessary for me to come home on TPN, as well as nurses to come in and train mum on setting up and disconnecting my TPN feeds. Five weeks on a ward with no TV, no phone signal, no internet, and on a ward with 5 dementia patients; it was a long an arduous admission. I’d also only recently transitioned into adult services, and mum was not able to stay with me like she did in paediatrics so I was making life or death decisions on my own for the very first time. It was a difficult time. 

TPN is a mixture of sterile nutrients in fluid, made up of glucose, amino acids, electrolytes, vitamins, minerals and trace elements, and on some days lipids (fats), which is slowly pumped into the bloodstream through a central line which gives access directly into the bloodstream and sits just inside the heart, or in a large (central) vein leading to the heart. These central lines come in different forms, including: 
  • A Hickman Line, which exits the body on the chest, enters the bloodstream in a vein in the neck and is threaded down into the heart (there are other brands similar to the Hickman); 
  • A PICC line, which exits the body on the arm and is threaded through a large vein into the heart. PICCs tends to be used shorter term than a Hickman as the PICC lines don’t last as long;
  • A Port-a-Cath, which sits in a large vein, somewhere on the torso, and has a reservoir that sits under the skin. This reservoir is accessed with a needle, so an infusion can be run into the bloodstream, but has the benefit that when not connected to an infusion, you can de-access the reservoir (remove the needle) and have no external line to worry about. Active people seem to favour this option as they can be fit and active, go swimming, do sports etc. with no external line or attachment to consider. 
My first Hickman Line, single lumen
I have a permanent Hickman line in my chest through which my TPN is pumped in over 21 hours every day. Some people only need their TPN over 10-12 hours, and some only need it 3-5 times a week as they can tolerate days off their feed. Unfortunately I cannot cope with longer than 3 hours off my TPN as my blood sugar drops and my body doesn’t hold onto fluid so I become dehydrated very quickly. I don’t mind being hooked up most of the time, as I stick the TPN in its special rucksack, pop it on the back of my wheelchair and go out and walk Molly or go to charity events, to meetings, give speeches, and go out generally to run errands, meet friends or family and anything else I want or need to do. I also, every day, have an extra bag of fluid, called Hartmann’s Solution, to top-up the TPN to meet my fluid requirements. My TPN contains 4 litres of fluid, pumped in over 21 hours, and I have 1 litre of Hartmann’s every day which I fit around what I am doing. The optimum time for me to have the Hartmann’s is 1pm-6pm alongside my TPN, or 6pm-9pm during the break off my TPN, but in the interests of not having two pumps running and having to secure the second pump to the drip stand on my wheelchair, I sometimes trial running it overnight alongside my TPN, but find it makes me very dry and dehydrated in the evening as I don’t hold onto that fluid. In my five years and three months on TPN I have had 6 Hickman lines, as well as 2 PICC lines when I have had line infections and need central access to last me whilst I was without my Hickman line. I have what is called a double lumen Hickman, meaning the Hickman has two separate tubes joined together so I can have two separate infusions running at the same time and they don’t mix until they reach my bloodstream, as many medications and antibiotics are not compatible with TPN so cannot be put down the same line as TPN. I have one dedicated lumen for my TPN, and my other lumen is used for regular IV medication, my IV fluid (Hartmann’s) and IV antibiotics. 

TPN is what keeps people alive when their gut has failed or they have short bowel syndrome due to a variety of conditions that have necessitated the removal of much of the small bowel (where nutrients are absorbed) and often also the large bowel (where fluid is absorbed). In my case, I have type 3 irreversible intestinal failure due to a combination of Ehlers-Danlos Syndrome, Chronic Intestinal Pseudo Obstruction and Autonomic Neuropathy. They also affect my bladder which has failed too. TPN comes with many, potentially life-threatening risks such as infections in the lines the TPN is delivered through, which then spread into the bloodstream and can cause sepsis (often called septicaemia, which is the whole body reaction to a severe systemic infection). Other complications include blood clots, liver failure (the fats in TPN can cause liver damage) as well as bone and metabolic issues. TPN is by no means a cure, but it keeps people alive and frequently gives patients a better quality of life. TPN must be set up and disconnected, the the central line accessed and things administered under strict aseptic (sterile) conditions to prevent the line becoming contaminated with bacteria, potentially causing line infections which can become bloodstream infections and can be life-threatening. This requires a special technique, known as aseptic technique (though there is another technique called aseptic non-touch technique) which, when done properly, prevent the contamination of the line with bacteria. Frequently the parents of children on TPN are trained to administer these feeds, and adults, if they are capable, are trained to do it themselves or have a parent, partner or family member trained, or can have nurses come in to set up and disconnect their TPN feed. TPN is a big commitment to take on, you have to have a medical fridge for the feed which must be kept at between 2˚ and 8˚ until a few hours before connection as they only last 24 hours outside of the fridge. TPN is light-sensitive so is frequently covered up with a bag which blocks out the light. The light de-stabilises the solution. TPN means you have an awful lot of supplies, which take up a vast amount of room. You need to also make sure no air gets into the line as it can cause a fatal air embolism, so as well as preventing contamination with bacteria, you also need to make sure no air gets into the patient. 

However TPN doesn’t stop people living full and active lives. It’s not the end of the world, in fact it can be the start of a new life for many people, finally getting the vital nutrition they need. TPN allows me to get out of bed as I have all the fluid my body needs to maintain my blood pressure to allow me to sit up, and gives me the nutrition and energy I need. Yes I get tired and it’s a lot of work to be on TPN but it’s so worth it. I am cared for at home by a team of ITU nurses 7am-11pm and HCAs 10pm-7am. Prior to May 2015 mum did all my TPN and medical care single-handedly, since carers cannot be trained to do TPN, so even though I had carers mum didn’t get a break. Sadly in April 2015 mum was diagnosed with a benign, but big and badly situated brain tumour, and so she needed urgent surgery. A battle ensued for a package and we finally won and I received what I have now, and luckily I did, as mum suffered a stroke and a bleed on the brain after the surgery and now has seizures. So my nurses do all my medical care and TPN as I am unable to. TPN has not only allowed me to survive, it’s allowed me to thrive. I do a lot of charity, health and disability work now and have achieved a lot, including receiving my MBE in the New Years Honours 2016 at the age of 22 for my services to young people with disabilities. It’s a huge honour to be recognised for my work and I am still shocked that I am actually Lucy Watts MBE. If it weren;t for TPN, I never would have lived to do all the work I’ve done, made the difference I’ve made and achieved the things I have achieved. I owe my life to TPN, but I also owe my quality of life to TPN. 

TPN is not a life-sentence or something to be feared. It should only be a last resort but it can completely change lives for the better. Yes it comes with complications but we wouldn’t survive without it, so we must take the rough with the smooth. TPN is amazing and we owe our survival to the doctor, Dr Stanley Dudrick, for inventing TPN and to the dogs, including stinky, on whom he raised on TPN to prove that it could be done in the face of a medical profession full of doubters. He has saved thousands if not millions of lives. So thank you Dr Dudrick for never giving up despite the doubters. 

TPN has taken me from this:

To This:

Tuesday, 19 July 2016

Social Media and Chronic Illness - A Blessing Or A Curse?

Let’s face it, we live our lives online nowadays. We post, tweet, upload photos and videos and update our status whenever we see fit, detailing our lives for our friends and followers to see. We post about what we do, what we eat, who we’re with, what plans we have, we share photos, and not only that, we shop online, handwritten letters are dying out in favour of direct messages, whatsapp and snapchat, we self-diagnose medical ailments, we study online, do research online, do our banking online; our lives revolve around internet and social media. However, social media and the internet has taken on a whole new meaning for those with illnesses. It is frequently the only way we can live our lives, stuck in bed, or housebound, or with very limited contact with the outside world. It becomes our place to socialise, keep up with the outside world, keep in contact with friends and family, and to share the ups and downs of our lives with our conditions. It also becomes the place we turn to for support, from the extraordinarily large online illness community, dotted around on Facebook groups, social media sites, forums and websites. We become friends with these people and share our stories, our worries, our fears, our news, and we seek support to cope with our conditions and the restricted lives we can live because of them.
The online illness community is vast, and the amount of groups on Facebook is scary. I myself am a member of far more than I care to remember, but barely interact on more than a few. I have a large circle of Friends on Facebook, over 2,000, and a large amount of those are people I’ve met in groups, through friends of friends and people who have been directed to me for advice and support, who have medical conditions and disabilities, or parents of children who have a condition or disability. I scarcely talk to many of them on a one to one basis, or at least not uphold regular dialogue with these people, and these ‘friends’ are dotted all over the world. It’s comforting to know you have people out there, at a click of a button, who are there to support you. That said, I do interact with a lot of people with conditions and disabilities on Facebook, and parents of poorly children, and am in touch with people I have met through my work, or through my illness and hospital admissions, family members, friends from prior to becoming poorly, and friends since since becoming poorly, and more. I’m also on Twitter, where I interact more for my work than anything else, and LinkedIn, for my charity work, YouTube, Google+, Pinterest, I have a blog/website and a Facebook Page separate to my personal profile, even my dog Molly has her own Facebook page with over 3,000 followers just for her. My network is a big one and it can be quite overwhelming at times. 

The online illness community, however, is a double-edged sword. It has many pros, but equally as many cons. 

People with illnesses become dependent on social media for support. We post about our conditions, share our journeys, ask questions, reach out for support in our desperate times, or simply talk with people who understand what we go through. Our lives become revolved around this online world of social media, of people who know so much about us, but yet know so little, who we’ve never met and probably will never meet, and upon whom we build great friendships. We become almost reliant on our interactions online. Our lives revolve around our friends, supporting them and them supporting us, sharing our journeys and asking advice or looking for support, or even inspiration. It’s a wonderful place for a poorly person, because they aren’t limited in interacting with people like we are physically, people are at the touch of the button, we don’t have to leave our houses, or even our beds, and we can socialise with people and have support and support others, and share our worries and woes. 

However, there is an enormous downside to the illness community, one which troubles me greatly and which does, at times, put me off. People who aren’t a part of this community might not understand it. The online illness community, at times, becomes competitive. That is to say, people compare themselves to someone else, think they’re worse off than the next person, and then see fit to outdo that person or groups of people on how poorly they are. It’s quite a twisted mindset, but one which a person can easily get sucked into and not step back and see their warped behaviour. It goes from support to competition, and that’s when bitterness, bickering and arguments break out, or when people get upset, or feel that their suffering is being belittled because someone tells someone else “you’re so much better off than I am” usually followed by something like “you have no idea what it’s like to be ill” or “I’d happily swap with you” or “you’d never cope with what I cope with”. There really is no need. It is a place for support, a place to help each other. We should not feel the need to compete. I am very poorly, but there are people worse off than me, people better off than me, but I don’t want to judge them in comparison to myself and go round telling people my judgement on which of the two they are. As I always say to people, a certain condition or a certain severity doesn’t necessarily mean greater or less personal suffering. Suffering is not dictated solely by illness, but by multiple factors; personal situation, support network, coping mechanism, their mentality on a certain day, whether they have other complicating factors, family situation, financial worries, whether they have a good and understanding team of doctors, and whether they have a mental illness which complicates their physical condition because they cannot always cope with the two combined. I wish there’d be a day where competitiveness was gone, and the peace was restored, and support would be the aim of the game. It’s easy to slip from things being “really, me too!” to being “I’m worse off than you” and so the competitive cycle begins. I don’t blame people for slipping into the trap, because it’s one easy to fall into, but it is extremely off putting and can belittle another’s suffering when there is no need, or even potentially do that person harm by making out that their suffering and their feelings about their life and their illness are in some way invalid. I urge people to just keep in check, read back what you write, and if you do feel someone is better off than you, keep that feeling to yourself. You never know what harm you could do to someone by expressing that and belittling their suffering and experiences. Remember, suffering is not dictated only by the condition and the severity of that condition, but in addition to the whole personal, familial, financial and situational conditions and whether they have a mental illness or are struggling to cope mentally with their condition generally, or on that day. Illness should not be measured by how you are compared to someone else, rather it should be based on extending the hand of friendship, supporting each other and making them see they still have worth, they matter, they will get through whatever obstacles they face and that they are loved and cared about. It makes the world of difference; especially to someone who is really struggling, and whom can be so easily tipped over the edge of the “coping cliff” (see past blog post for more). 

The online illness community is a wonderful place for people with limited contact with the outside world, or as somewhere to feel understood and less alone. However we need to remove the competitive element, and restore the completely supportive atmosphere. You could do serious damage to someone who is struggling by telling them they’re better off, thus belittling their suffering, so watch what you say and whether you think you’re worse off than someone or not, never, ever, voice that. It can do untold damage to someone who is struggling or has a mental illness. Suffering cannot be compared or measured, nor should it be. We all struggle with our own unique problems and situation and you cannot start belittling others, otherwise it’s not a support group. Giving advice and support, sharing things with people and cheering people up, making them feel worthy and loved and showing them they matter should be the focus of groups and the damage will be eradicated, and a wonderful support group restored. Not only that, it could save a life of someone who is struggling. Just watch next time you post, read back what you’ve said, and think about how someone would read that. Put yourself in someone else’s shoes, and imagine how your message would make them feel. Just stop and think. You have the power to change someone’s life, but you also have the power to destroy it, using only words on a social media site or forum. So use your words wisely and supportively. 

Wednesday, 6 July 2016

The Power Of A Picture In Healthcare

You see me at my worst. You see me stuck in a bed in hospital, in pain, struggling, fighting repeated bouts of sepsis, reliant on more IVs and pumps than I already am at home, covered in bags and tubes that dictate my survival both outside and inside hospital, and you see me in a medical viewpoint. You don’t think about my life outside of hospital, because it’s not considered essential for my care. You don’t need to know who I am, or what I do. If it’s not key to my survival, it’s not important. 

Wrong. Who I am and what I do is key to my care and my survival. It’s my identity. So often this gets lost in the sea of medical words, test results, histories, examinations and prescriptions for medications. It gets lost in a world where the condition is who you are, it’s how you’re seen. I’m not Lucy Watts MBE, Charity Ambassador, Patient Leader, Writer, Speaker and dog-lover, I’m often simply “That girl with Ehlers-Danlos and intestinal failure who has all those tubes and bags and who is bed bound”. “Send the medical students round as she’s a great practise case”, which I love to do. However, that is not all I am. I am not a condition. I am a person. I have a life. A meaningful life. I strive to advocate for and make life and services better for others. I take my experiences and turn them into actions. I am always working, always learning, always doing something for the greater good. Always trying to give back more than I take from this world. Always trying to make my healthcare professionals know how much I appreciate their hard work. The girl who writes a blog, makes speeches, fights for others, and strives to make the world a better place. The girl who thanks the world every day for the people that fight to keep her alive. That’s who I am. 

You don’t know that though; you don’t ask, and very often, I don’t have the time to tell you all about myself. So if you wonder why I try to squeeze essential bits of information about me into our conversation, please hear it and take it on board. It’s my way of humanising me and making you see that I am more than just a girl trapped in bed. It’s not detracting from my care, it’s enhancing it. It’s not me giving you information that isn’t helpful, it’s showing you who I am. What’s important to me. Why I fight to survive. Why I am so grateful for your hard work to keep me alive. Information that is crucial to why I fight so hard to survive, even when you look at my life from the outside and think “is all of this worth it?”. To me, everything is worth it. I will never give up. Life is too precious, and I have so much more work to do! 

I wish all patients families would bring in a picture of their loved one prior to admission, and keep it by their bed or on the wall, reminding doctors and nurses of the person they are aside from their illness. To see the person as their true self, as opposed to the person before you who may be confused, upset, covered in wires and tubes, sedated, maybe swollen or jaundiced, and very, very poorly. A picture can make the world of difference. It humanises people. I myself know the benefit this has to healthcare professionals, and I can imagine it especially makes a difference to patients in ITU/Critical Care who may be covered in wires, on ventilators, very swollen, sedated and poorly and it must be hard to picture them as their usual self, minus all the interventions and outward signs of how poorly they are. Pictures remind staff that the patient is a person, and helps them to see who they’re caring for. My home ITU nurses, many of whom still work in ITU in the NHS, all agree that a picture makes a big difference, and helps them see the person as they are outside of hospital. I know when I take photos in of me, nurses - and doctors if they have time - find it very useful to see me outside of hospital. It does help. I usually get a remark from most professionals if I put a picture up, and it does make a difference. I remember when my hospice nurse Bev came round one day and she’d only ever seen one picture of me before I became ill and that was a picture I have in my bedroom of me on a coloured horse jumping at a show prior to becoming ill. She’d not seen me aside from the poorly patient she came to know. So one day, we got out some photos and selected our favourites to show her. What a difference it made for Bev to see me as I grew up, the person I was and what I looked like. She was really glad we showed them to her. Bev always sees me as a person and knows me very well, but it even benefitted her. When I take them into hospital people always comment and it’s lovely. It just shows them “me”. 

I have a medical file I made for myself with all my information in it, and I always hand a copy in upon admission. The front page contains a photo of me, so you start off the file seeing a picture of me as I am at home. Then the final page of that medical file is a page all about me aside from my illnesses. It has a summary of my charity work, about me as a person, what I do outside of hospital, and has three photos of me at the bottom of the page. Doctors don’t get the chance to read that page, but when the nurses do, they always comment on it. It just allows them into my normal life as it is at home, shares who I am and what I do, sharing this with people who are overstretched and can be forced to see a condition and care needs rather than a patient due to a lack of time to treat patients otherwise. 

Pictures are invaluable in medical care. It humanises patients. It shows them who you truly are, aside from what brings you to hospital. That you have a life outside the confines of the hospitals, and any pre-existing conditions you may have. It shows who you are, a person, with a family and friends, a life, hobbies, interests, goals. A life you are fighting so hard to get back to. So, next time you are admitted, put a picture on the wall or bedside. Show your professionals who you are. Show them why you fight so hard to get better. Show them you’re more than a condition or list of symptoms. You are you. You are unique. You are loved. You are a person, not just a patient. And you have a life to get on with living!

Sunday, 3 July 2016

NHS Wheelchairs, Complex Needs & Specialist Wheelchairs

On Tuesday 28th June 2016 I participated in a TweetChat with NHS PHB and others, discussing PHBs for wheelchairs to replace the inadequate wheelchair voucher system and hopefully improve the postcode lottery that currently exists. It was a wonderful debate and discussion of ideas, and I was very pleased not only with my own contribution, but the contributions of others. It was great to discuss our ideas about how PHBs for wheelchairs would work, as well as the importance of thorough assessments and each service joining up with other services and other aspects of our lives and our care. 

In NHS wheelchair services, and in today’s climate, provision of wheelchairs is woefully inadequate. The lack of funding is putting a lot of strain on wheelchair services and means they provide only the cheapest of wheelchairs which, sadly, do not fully meet patients needs in the short-term, let alone in the future, especially in the cases of progressive conditions or eventual deterioration. With a lack of resources it’s hard to meet the needs of the growing population of wheelchair users with cheap chairs, let alone more expensive ones, but as a result, disabled people are being forced to seek funding from charities and fundraising campaigns just to get an essential piece of equipment; a wheelchair is not a luxury, it is our legs, our mobility, our independence. We rely on them to get around, without which people would be housebound, or for patients like me, completely bed bound. We cannot live any sort of life without a suitable wheelchair, and sadly wheelchair services have lost sight of, and cannot afford to provide for, people with complex, specialist needs who are dependent upon expensive wheelchairs. Charities funding wheelchairs are saturated with requests for funding as a result. 

I would know. I became poorly and a wheelchair user in January 2008, at the age of 14, after a childhood full of problems that were never connected or explained. It took 10 months following becoming wheelchair bound to receive a diagnosis, Ehlers-Danlos Syndrome, which came four days after my 15th birthday. I received my first manual wheelchair in March 2008. I struggled in the manual wheelchair, unable to propel myself thus dependent on someone to push me wherever I wanted to go; even if only a few inches backwards or forwards. I persevered like this, since I was almost completely bed bound anyway, for over three and a half years, until I moved house and started college. I was only well enough to go in for an hour a day, despite doing three A levels in the sciences, due to not having a suitable wheelchair, and due to my conditions. We had spoken to wheelchair services about a powerchair prior to moving, but our old house couldn’t have been made wheelchair friendly at all, unless you knocked it down and started again. So, through necessity and due to my needs increasing, the house being unsuitable, and my parents’ divorce, we moved into a lovely bungalow five minutes away from our old house. The occupational therapist who was assessing me for all things non-wheelchair, arrived to assess the house only an hour after we got the keys and could start moving in. She was fantastic. She immediately put the application in for a wetroom, which took another 2 years to be adapted, made the applications for two doors to be widened, and then, we thought, came the most crucial step of all; wheelchair access (ramps). After thinking we’d be able to get the ramps and start the powerchair process immediately after moving in, we were to find out we were completely unprepared for reality. We applied to wheelchair services again for an assessment for a powerchair, but the minute they realised, despite living in a bungalow, that we didn’t have ramps, they denied me on that count. Not even to assess me. So, we turned to the OT about the ramps, after she had assessed the house the day we moved in. We were to find that the budgets were spent for the following three years, so there would be no money to provide ramps for me or anyone in our area until at least three or more years later. Combined with this three-plus year wait for ramps, we couldn’t have the powerchair assessment without ramps, and even once we had the ramps put in, there was an 18 month waiting list for a powerchair assessment, so we were told. As a result, that’d have been at least four and a half years before I could even be assessed for a powerchair, provided I was first on the list to get ramps once the budget was available again and first on the list to get assessed for a powerchair. Four and a half years to get some mobility and independence! It’s crazy.  

I couldn’t wait that long. College was so difficult in an unsuitable manual chair, I couldn’t be independent, and it was hampering my ability to do my work. I needed a powerchair, so I could drive myself and so my carer could leave me in class - the fact I had a carer seemed to put people off talking to and including me - and I could move around the college independently, but also needed a chair that could tilt me back to help with one of my conditions which causes blood pooling in the legs and lower abdomen, causes low blood pressure, a high heart rate, an intolerance of being upright for long periods and could lead to me passing out. I also needed a chair with seat rise on it, so that I could reach the top of the burette to do my own experiments, rather than relying on someone to do the physical experiment for me, acting on my exact instruction. It was hampering my ability to learn. With nowhere else to turn, and desperate to fit in at college, to be able to attend for longer, socialise with my peers and to get out and about outside of college, such as to walk my dog, we chatted to my OT at wheelchair services about what wheelchairs would be most suitable, and he recommended a Quickie Salsa M. So that’s what I tried, and it truly was perfect for what I needed, with tilt in space and seat rise. We set about fundraising the £8000 to pay for it. We managed to raise the amount in two months, and I finally got the chair in March; but we didn’t have a suitable car for me to travel in the chair in the car, so I couldn’t get to college in it. Sadly, also, by the time I received the chair, I was too poorly to attend college anymore, my gut having failed and my body suffering the effects of severe malnutrition that very nearly claimed my life.

However, a year later I was getting out and about in my Salsa M, walking the dog, we went to see the Paralympic dressage in Greenwich, and getting out and about generally. I was considering going back to college, but my conditions hampered that. I now had a central line, a line into my heart, and was depended on intravenous nutrition, which was slowly pumped in through this line into my heart. My digestive system had completely failed and my condition generally was progressing. However, the one good thing I had, for my good days, was the wheelchair, and I didn’t half test my Salsa out on some dog walks, got stuck on a few occasions, and got it through some small spaces most would consider impossible for a wheelchair. It was the key to me getting out of bed. It took me to the stables to see the horses I used to ride, it took me on dog walks, and then, when the opportunity arose, it took me to Parliament, the Department of Health, many events, meetings and more. It allowed me to start training Molly as my assistance dog, and have a go at agility with her. It allowed me to build a life for myself writing, speaking and attending events for charities. It allowed me a life, where previously I hadn’t had one since becoming poorly and disabled in January 2008. 

However, needs do change, and my condition continuously deteriorates at a variable rate, sometimes deteriorating rapidly, other times more slowly, but nevertheless, always deteriorating. It meant that by December 2014, I was struggling. I didn’t have a chair that could elevate my legs or recline the backrest, and I needed a new chair, fast. I managed to scrape together the money to buy a Quantum Q4, with electric tilt, electric recline, manual elevating leg rests, but no seat rise. It really was only a stop-gap chair, and the longer I had it, the more unsuitable it was for my needs. I was in agony sitting in it, it wasn’t supportive enough, it didn’t have all the functions I needed, and I couldn’t drive around if I was even slightly tilted or reclined. It also used to get stuck half way up the ramp into the car where the level mechanism would feel the chair on a tip and completely stop it working. It was causing more harm than good, and so onwards went the search for a new powerchair. I found Permobil chairs through a friend who had tried one out. I instantly knew it was going to be the perfect chair, even down to the shape of the seat, the support, the whole chair, with much customisation, would fulfil my requirements completely. The catch? The NHS won’t fund a chair for someone at a cost of £22,500, and I’d probably still be waiting for it now even if they did, plus it wouldn’t have all the functions and customisations I need for it. 

I now had the task of fundraising for it. I had experience from 2011 when we fundraised for my Salsa, but this time, I was doing it without help. It was only me. I managed to raise that fantastic total in 3 months; to raise £22,500 in three months is astonishing, and I am so grateful to those who supported with monetary donations, those who supported my fundraising, and also those who supported in sharing the fundraising campaign or talked to people they knew. I am forever indebted to those who supported my campaign. So I had the money and was able to order the chair. My requirements were unusual, but Andy at Permobil UK worked tirelessly and creatively to get the wheelchair right. I needed a chair with all electric functions - tilt in space, recline, elevating leg rests and seat rise; lateral and thigh supports; curved calf supports; a tilted footplate to reduce the angle through my ankles; a special cushion; hooks on the back for my TPN rucksack and Urostomy drainage bag, and a strap to hold them steady so they didn’t swing and fly around; a built-in drip pole so that I could have intravenous fluids and medications whilst in my chair; I needed the chair to drive full speed with the legs elevated, as I drive around like that normally to reduce blood pooling; I needed the leg rest as low as it’d go since I am so tall (6’1) and I needed a built-in lead hook for Molly’s lead so that I could walk her hands free. A lot to ask and to include in one chair, but Andy made it a success, with a bit of trial and error. Would I have got all of this on the NHS? Absolutely not! However because I fundraised, I have the most perfect chair which has revolutionised my life. Since I got it in September 2015, it’s taken me to Parliament, the Department of Health, the Cabinet Office, Sky News, BBC Essex, Buckingham Palace, and allowed me to appear in a BBC Three documentary, and attend other events and do other work. Without this chair, I’d be stuck in bed because my old chair was not suitable for my needs. And in a lovely way, I donated my Quantum Q4 to a friend who would otherwise not be able to get a suitable chair. 

That is my story of how I could not get a suitable chair on the NHS, and my journey through fundraising for suitable wheelchairs. The NHS would not only not have given me a chair with all the suitable functions for the immediate future, but long-term they wouldn’t have given me something that can adapt to my ever-increasing needs and continuously deteriorating condition, unlike how my Permobil has continued to be suitable in spite of massive deterioration since it arrived in September 2015. It will continue to meet my needs, and can always be adapted to suit changing or increasing needs as time goes on. That’s what you call a suitable chair. A powerchair that gives someone independence, quality of life, allows them to pursue their hobbies and passions or even allow them to work, enables them to have a social life and to do everything they want to and gives them their life back, as well as meeting all their needs and requirements, now and in the future. That is a truly suitable chair, but the NHS cannot provide expensive chairs, thus patients turn to fundraising to get such a chair. Many people can cope with NHS chairs if they have small or simple needs, and only need a basic chair, and they work very well for people, but my needs don’t allow that. Without my Permobil I’d still be stuck in bed, and I wouldn’t have done all I’ve done since I got the chair in September. My charity work would’ve ground to a halt completely, and so would my life.  Had I waited and received an NHS chair, I’d still be waiting now, and wouldn’t have a truly suitable chair at the end of it, thus I would still be stuck, uncomfortable and not able to do everything I want to. 

Where wheelchair services lack funding, and cannot afford top-of-the-range chairs, patients are getting unsuitable chairs that won’t last. In that sense, wheelchair services shoot themselves in the foot, as they provide for the now, not for the future, and patients deteriorate and in 3 months, 6 months, 1 year, 2 years wheelchair services are forking out for another new wheelchair and usually a more expensive one to meet their increased needs. It’s crazy. But that is because wheelchair services don’t have the funding to do it any other way. I’m not out to criticise wheelchair services, they do their best in a bad situation and with a shoestring budget, but they do need to consider the long term, as they will save money in the long run. 

I do hope with the potential introduction of wheelchair Personal Budgets this may change somewhat, or be easier, but sadly, funding isn’t going to be increased, rather, simply rerouted through a new funding process. At the end of the day there’ll be no new money, so the contribution they can give towards a chair will remain the same, but I hope it’ll give people more flexibility and control. If it were to be combined into someone’s pre-existing PHB (for those that have one), they could pool some of their spare care hours, if they have any, and use that in addition to the wheelchair services grant to cover some of the cost of the chair. However, it wouldn’t really make a difference for expensive chairs, as the patient will still be left fundraising a large sum or securing charitable grants to cover the majority of the cost of the chair. I think it’ll improve things, but it won’t change the situation and it won’t add any new money to the ever-dwindling pot of money wheelchair services have to fund wheelchairs from. 

Our wheelchair services need a complete overhaul, and I truly believe in the future assessments for any form of support or equipment would become a multi-agency assessment. The person would have a holistic assessment ranging from nursing and personal care needs (to be funded through Continuing Healthcare and/or Social Services), to equipment such as wheelchairs from wheelchair services, to daily living aids and transferring aids/hoists, to household adaptations including wet rooms and ramps from the Local Authority, and even psychiatric/mental health, therapy and wellbeing needs assessed to put all the patients needs in one place, in one assessment, that all services can refer back to and know what each other has assessed in their respective areas. A carers assessment should also be performed to make sure the carers’ needs are met too. Multidisciplinary working is the name of the game in future healthcare and social care, and so it should be in the assessments for care packages, equipment and support. This includes in the assessments of wheelchairs; such as a joint wheelchair assessment with a wheelchair services OT, a physiotherapist, an OT specialising in hoists and transferring aids and a CNS tissue viability nurse all assessing the patient at the same time for the right wheelchair, and liaising throughout the process with the patient and their family to find out what they want from a wheelchair, what they’ll want to do with it, what they think the perfect wheelchair looks like and discuss any ideas or changes to plans with the patient/family first. It’s all about teamwork and multidisciplinary/multi-agency working.   

Sunday, 26 June 2016

Patient Leaders: What Are They and Why Are They So Vital?

We need a co-operative NHS, one in which patients and professionals can work together on an equal footing to improve our NHS and in which patients are valued for their expertise on the health service, being experts by experience. Patients' power to change and improve services and to help solve problems needs to be harnessed, and their unique perspective to be integral to the commissioning, provision and delivery of services. Every department, board and service at every level of our NHS, including hospitals generally and the departments/specialist services within them, community services, Clinical Commissioning Groups and all committees, boards and groups right up to policy, strategic and stakeholder level should have patient leaders who can bring the patient voice and experience to every aspect of the inner workings of our NHS and its continual development and improvement. The patient voice is vital.

As a patient leader myself, I know the benefit of the patient perspective in all levels of our NHS and I get very positive feedback about my work from professionals at all levels, because professionals are now starting to realise the benefit of involving patient leaders in the NHS. As such, I cannot understand why it has taken so long for the knowledge and experiences of patients to be recognised for the powerful insight it provides to the NHS and how each strategy, decision and policy effects the experience of patients receiving care from NHS services, revealing its successes as well as the weaknesses and problems within it. Even more incomprehensible is why it's taking even longer for the NHS to take advantage of the highly valuable information and insight provided by patient leaders and to make the inclusion of patient leaders a requirement in all services, departments, boards and committees, commissioning groups and in policy, strategy and decision-making processes. Patients' powerful knowledge, insight and unique perspectives need to be harnessed and patient involvement implemented in the health service, from the frontline services right up to the highest levels of NHS management.

The involvement of patients in all levels of the NHS is mutually beneficial; its benefits to the NHS cannot be underestimated, but the benefits to the patients who become patient leaders is two-fold. Their input will result in improvement of the services and continual development of the NHS to become better, more modernised and able to meet the needs of our ever-changing and ever-expanding society, which will benefit them when they access such services. However there is another side to this: that is the empowerment a patient will feel from taking an active role in improving health services and the NHS as a whole. Empowerment is an extremely powerful thing. It will give the patients the feeling of being on an equal footing with health service professionals and stakeholders, as well as the knowledge that their voice is heard, they are valued in the health service, and that they can help in the improvement, planning and implementation of services. For some patient leaders, like myself, this gives their life a purpose and their struggles and suffering some meaning. Patient involvement also allows patients to use negative experiences in a positive way; rather than simply writing a complaint listing what went wrong, the patient leaders can actively help in finding solutions that would rectify what went wrong in their care and with other problems within the NHS and help with their planning and implementation. I think this would drastically improve patient satisfaction, to know that a bad experience can be turned into a positive, with tangible results. When you listen to patients who have lodged complaints, two common themes crop up:
  1. patients complain because they don't want their negative experience or medical mishap to affect someone else, so they complain in the hope something will change and no one will experience what happened to them.
  2. there's rarely feedback about how a person's complaint has helped or lead to changes, nor patient involvement in solutions to problems, thus patients feel like their complaint won't change anything as "nothing ever changes" - and even when something does change, they never hear about it - and as a result, patient satisfaction is poor.

Patients wanting bad experiences to bring about change is an invaluable tool that needs to be tapped into; how many of those people could become effective patient leaders? Sadly we're missing out on their views and their opinion on how their bad experience could've been rectified, and how it can be prevented from happening again. With the latter, if they were part of developing the solution, I am certain their satisfaction would dramatically increase.

Involving patient leaders is an invaluable tool and should be integral to our NHS, now and as we move into the future.

Another benefit to having patient leaders is that they can bridge the gap between patients, the general public and NHS professionals, services and management. Patients and people on the whole tend feel much more comfortable giving feedback to or talking about issues with someone who understands their perspective on a personal level and who is on an equal footing to them. As such, patient leaders can be a valuable tool in obtaining patient opinion and patient concerns and compliments, as they aren't facing what can be daunting prospect of sharing concerns and complaints with an NHS professional, instead they're talking to a fellow patient, one who happens to work alongside the professionals within the NHS, but is still, crucially, a patient just like them. Patient leaders should also be utilised for their ability to more easily form patient networks and head up patient involvement projects and patient focus/steering groups, which should lead to more patient involvement. I myself am very well connected with other patients and do a lot of networking, making use of all the tools available to me: mostly social networks, forums and via my blog. I could name a number of people who would make brilliant patient leaders, and easily get the opinions and get qualitative information from a good sample of patients as part of my work. An example of the better response to patient leaders than to professionals is this:
The charity for whom I am a trustee organised our first patient information day last year. At the end of the event, our research nurse asked that attendees gave us feedback on the day in order that we can learn what was good and bad, if they found it beneficial, what they found most interesting or useful and if we were to do it again, what people would want included and so on. Sadly, very few people sent the research nurse any feedback, which was disappointing. Conversely, on my Facebook page that day I asked what people thought and whether it was a success and, though the information wasn't qualitative and descriptive in the same structured way the feedback forms would've have been, I received a lot of feedback from patients who had attended. Hence why I think that patient leaders are the key to better patient and public involvement. Patient leaders are able to bridge the gap between patients, the public and NHS professionals, services and agencies, benefitting the NHS in many ways, and I think using experienced patient leaders to head up the implementation of patient and public involvement (PPI) projects and patient steering/focus groups will vastly improve the amount of patients willing to participate, take an active role and possibly go on to become patient leaders themselves.

There is another side to patient leaders that, as yet, I have not seen considered, one which might greatly help the acceptance and utilisation of patient leaders throughout the health service in the future. I believe that patient leaders should be involved with medical, nursing and midwifery schools, due to patient leaders' intimate knowledge of the NHS and the delivery of care as we, the patients, experience it. Patient leaders could play a valuable role in the education of the healthcare professionals of the future. Patient leaders will able to show medical, nursing and midwifery students the impact of good and bad care, different ways of handling things such as giving news in a way that is more sympathetic and sensitive to patients' needs and feelings, and how to deliver complex medical information in a way that is manageable and easy to understand. 
Involving patient leaders in medical education will also help to move towards an NHS in which patient involvement is normal, as the students will be used to working with patient leaders on an equal footing. It would prevent the separation between professionals and patients that is prevalent within the NHS, which can hamper the use of patient leaders, with doctors and nurses holding the authority rather than patients and professionals working hand in hand to improve our NHS. Having worked with patient leaders in their training, it should prevent this situation or attitude arising as the students will have been collaborating right through their medical education with patients, bridging the gap and meaning healthcare in the future will become a collaboration between healthcare professionals and patients. This will be achieved through the use of patient leaders as well as patient and public involvement on a bigger scale such as through steering or focus groups and even patient networks, and even lead to healthcare generally being collaborative, patients, doctors and nurses working together to get the patient well rather than it being purely down to the doctors and nurses; I consider my own medical care with many of my professionals as collaborative, we work together to improve things and I am an integral part of my care, decision-making and thus, the short- and long-term management of my conditions. 

At the NHS Takeover Day, December 2015, held at the Department of Health; an event I co-chaired.
Being a patient leader is a huge responsibility and is not always easy. To speak up in a room full of eminent professionals, officials, charity CEOs and top experts in their respective fields and be the patient voice, to put across our point of view, to demonstrate the impact of the decisions or points being made on patients, and to stand up (figuratively, in my case) and be a part of the discussion takes courage; so easy it would be to feel intimidated and lose your confidence in the presence of these highly-qualified individuals. You have to be polite and respectful, to acquaint yourself with the people you are working with, to be receptive to various different viewpoints and to debate points and ideas in a civilised manner, but also be assertive, be confident in your role and eloquently get your point across. As a patient leader you have to vocalise based on your own experiences but also represent the experiences of patients as a whole, or on behalf of subgroups of the population about whom the topic concerns or the decision will effect. You have to stay abreast of the discussion at all times, process facts, figures and information which can be very in-depth and even confusing at times, and you must do your research if you are to back-up your points with facts, as inaccurate evidence or figures never makes a good impression.  

So far, my work as a patient leader has been positively received and appreciated by the professionals I have worked with, and has been thoroughly enjoyable for me. Through my own experiences I know the power that patients possess and very much feel patient leaders are a key player in the future of our National Health Service, and it is imperative that patient leaders become an integral part of every team, service, board or agency within the NHS. However I'd like things to go one step further than that. I think the role of Patient Leader should be one that is respected and valued. It should be recognised as an occupation: the patient leader being a patient perspective and experience consultant, a patient advocate, a patient liaison officer and a director of patient involvement all rolled into one. That's what I envision as the future of patient leaders, or different types of patient leaders that could develop. I see Patient Leader, along with my other charity work, as my job; I don't get paid for it (much as I would love to) but it is my life's work, it's my purpose in life and I put my all into it. It gives me a positive focus and puts a positive spin on my struggles; I can now use my experiences, good and bad, constructively to benefit others and make a difference. I'm sure other patient leaders must feel the same.

In order for the successful involvement of patient leaders, and the success of patient and public involvement schemes, steering and focus groups, the venues, meetings and materials must be inclusive for all. Access and communication needs must be provided for, as must support for visually impaired and hearing impaired people, so that participation is equal for all. The method of participation is also crucial; not all patients will be well enough or able to attend an event or meeting, so the use of Skype/video-calls or basic phone calls would be one way of resolving this issue. Other examples of reaching people is through the use of social media, through telephone conversations, video-conferences and tele-conferences, visits to their home, a representative attending social or support groups and talking to members, contacting people via email, online and paper-based surveys etc. All methods available should be utilised so that patients from different backgrounds, ages, abilities, technology use/understanding and with different needs can still be included. Patient leaders will likely be ones attending official events and meetings with professionals, stakeholders, board members, CEOs etc. and taking active roles, therefore access and communication needs must be provided for, choosing venues with wheelchair access and disabled toilets for example, as well as providing materials in formats that accommodate the hearing and vision impaired, and being prepared to accommodate support workers who may be a attending with the patient and to accommodate equipment patients may need to bring with them. Reimbursement for expenses for patient leaders attending events and meetings should also be considered. Many patient leaders, some of whom may be unable to work and reliant on benefits, could struggle to meet the costs of public or private transport or need some reimbursement for support workers if it exceeds that which is funded by their personal budget/care package. This should be considered in order for participation to be possible and inclusive of all needs, abilities and backgrounds. There's a lot to consider when including patient leaders, but the benefits outweigh potential costs in a big way; the benefits and positive impact of patient leaders is immeasurable. 

Patient leaders are an invaluable tool in healthcare, and should be utilised throughout the NHS on every level. Patient leaders bring a unique perspective to the table, one which is underrepresented, and its impact and the power of the insight it provides vastly underestimated. Patient leaders should be an integral part of the planning, decision-making, commissioning, developing, improving and functioning of the NHS and patient leaders given the recognition they deserve for how vital a role they play. Patient leaders will not only improve the NHS itself, but bridge the gap between patients, the public and the NHS and hopefully Patient and Public Involvement will continue to grow, especially with the recent release of the NICE guideline on community engagement (https://www.nice.org.uk/guidance/ng44). Most of all, I hope that patient leaders will become an intrinsic member of the NHS workforce and that Patient Leader is a role that gets the all important recognition it deserves. 

Patient-centred care is the way forward in patient health and social care; likewise, patient leaders are the way forward and a necessity for a truly 21st century NHS. 

Lucy Watts MBE

Announced as one of the top 50 Patient Leaders by the Health Service Journal Awards (July 2015).


If you would like to request my services as a patient leader please don't hesitate to contact me. I can give speeches, attend meetings and events, write pieces and appear in videos as a patient leader myself, or about the use of patient leaders and public/community involvement.

To see an example of my work, you can read about when I co-chaired an event at the Department of Health in December 2015, the Young People's Health Partnership NHS Takeover Day, alongside Jon Rouse - click here

Want to learn more about patient leaders? See the below links to the Health Service Journal articles on the subject to find out about what patient leaders are and what they do. 

Patients offer so much more than just feedback:

The Quiet Revolutionaries - Patient Leaders:

Patient Leaders are the powerful voice that drives change:

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