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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:

Monday, 20 June 2016

Nursing & The Loss Of The Bursary - Poem by Lucy Watts MBE

My poem about nursing and the loss of the bursary. I'm 22 years old, have a life-shortening form of a condition which is not usually life-shortening, but due to the complications I have, it sadly will be. As a result of my conditions and their complications, I spend a lot of time in hospital and even when at home I have a team of ITU nurses who care for me, an ITU nurse being with me every day from 7am-11pm and then a carer overnight. I have the utmost respect for nurses who have a rough deal in the NHS, and the recent RCN conference sparked off an idea and hence the writing of this poem. It is also born out of my gratitude to all the nurses who have played their part in my care over the years. 
~ Lucy Watts MBE

I spend a lot of time in hospital, in the presence of medical staff
I love those who will take the time to advocate on my behalf

My body may be broken, in a truly spectacular fashion,
But I receive a lot of nursing, support and compassion

There’s a big threat to the quality of care nurses can provide
When the amount of nurses on hospital wards continues to divide

And then you take away the fund they rely on to sustain
You take away their passion, put them under more strain

You give them very little of their much deserved respect
But more and more of them you come to expect

You wonder why nurses are now falling like flies
Their workload and lack of support is the cause of their demise

Nurses are suffering burnout, an outbreak of depression
And let’s face it, we’re already in an NHS recession

You expect them to do so much, with absolutely no reward
You take away the love they have, for a job they’ve always adored

You cry “we need more nurses” and yet take away support
You obviously gave your actions no serious, careful thought

It’s not ‘just a bursary’, it is a truly vital resource
One you took away, with not an ounce of remorse

The morale for student nurses will slowly begin to diminish 
The nursing degree they take, will they ever be able to finish?

I have the utmost respect for all the nurses I have met
The ones who I have come to know, the ones I’ll never forget

I think back on every admission, every long hospital stay
And say thanks for all the nurses who’ve looked after me each day

From the nurse who stayed well past her shift to check I was okay,
And got the things I needed that she’d been fighting for all day

The nurse who held my hand and sat with me for a while
The ones who never fail at getting me to smile

The ones who take the time to listen, who become more like a friend
The ones I can depend on, the ones I will defend

The student nurse that listened to me, desperate to learn
The one whom when she qualifies, a pittance she will earn

We’re at risk of taking away our nurses passion for their profession
If we’re not careful, we’ll lose our nurses in quick succession

If we’re struggling with a lack of nurses to fulfil the growing need
Why did you take away the bursary nurses depend on to succeed?

We need to give our nurses well-earned admiration and respect
The praise they so badly deserve, with immediate effect. 

(c) Lucy Watts MBE, 2016

Saturday, 11 June 2016

Becoming Lucy Watts MBE - My Day At Buckingham Palace

In the New Years Honours 2016, I was appointed Member of the Most Excellent Order of the British Empire for my services to Young People with Disabilities. Then on Thursday 9th June 2016, I received my MBE in my Investiture at Buckingham Palace, presented to me by His Royal Highness The Prince of Wales. It is a huge honour to be appointed an MBE, especially given my young age, I’m only 22, and the fact that my period of work hasn’t spanned decades like many others. However, it’s highly unlikely that my life, and my work, will span decades, which makes it even more special to receive the Honour whilst I am at the peak of my work, and am still well enough and able to attend my investiture, and able to enjoy being a Member of the Order. It is a huge honour to be recognised for my work. My charity, health and disability work gives me a positive focus away from the pain, suffering and struggles I have as a result of my conditions, and the restrictions the conditions and their complications impose upon my life. To have something to focus on, a purpose in life and an ability to use my experiences - good and bad - constructively to benefit others, is very important and a key component of my coping mechanism. Being able to distract myself with my work, and at the same time, advocate for, represent and support others with chronic and complex conditions and disabilities is a great way to use my energy in a productive and worthwhile manner - however limited my energy may be on some days. 

The build up to my Investiture wasn’t the best; I had three months very poorly with repeated bouts of sepsis and developed an infection in the build-up to the day of my Investiture itself, but nothing was going to ruin my very special day. I bought my dress and fascinator well in advance - a hat or fascinator is a requirement for an Investiture - and we planned the day with military precision, to make sure we had all the equipment, supplies and medication we needed, to make sure everything was ready and in order, and to make sure that we didn’t forget the tickets or any of the other documentation, or our photo ID. Nothing was going to prevent me attending or enjoying my special day, and what a special day it was.  

We had a problem-free drive up to London in the car, arriving with an awful lot of time to spare. Eventually they started allowing us in. Driving through the Palace gates and into the forecourt was absolutely amazing, a very special feeling. We were greeted by staff who would help us throughout the day - I cannot fault their support and access for those in wheelchairs or with disabilities, they truly are second to none. Once out of our vehicles all recipients and our guests gathered in the lobby for a while before we went up a floor. I was then separated from mum, Grandma and my nurse, Faggie (sadly my sister Vicky was too poorly to come with us). They were taken to the Ballroom where the Investiture would take place, and I was taken to a very beautiful and decadent room full of paintings and with so much detail on the walls, where all the Honours recipients gathered. There I met and talked with a few of the very impressive and worthy recipients, who were very positively surprised and congratulating me on achieving an Honour at such a young age. I may even be able to help a fellow recipient to get the care package and equipment she needs for her husband to return home from hospital where he’s been for over a year due to the Scottish NHS not funding care packages like the one he needs as of the 1st April this year. I do hope I will be able to help. 

The guests in the Ballroom were briefed, as were we recipients in our room, and then groups of recipients were taken through in groups of 15 to 20. We could watch the ceremony on a screen so we all knew what to do and make sure we didn’t make any mistakes! Then came my turn as I was called into the third group. We moved through the rooms of Buckingham Palace, and then moved through the back of the Ballroom where the ceremony takes place and into a room beside the Ballroom where we waited for our turn to go in, one by one, to be awarded our Honour by His Royal Highness, The Prince of Wales. 

(c) British Ceremonial Arts Ltd
Finally it was my turn. I drove into the room a little way, on the spot where I was told to wait until I heard my surname called, whilst the person before me received their award. She received her award, then backed away from HRH Prince Charles, curtseyed and walked off to the other side. I then drove into the centre and turned and faced His Royal Highness, bowed my head, and drove up to the stage. Prince Charles stepped off the stage so he could put my MBE on the hook that had been placed on my jacket earlier in the day, and we talked for a few minutes. He asked me about my work, congratulated me and said my work is very impressive, that I must make a big impact and help a lot of people, said I must be proud of myself and to keep up the good work. He then complimented me on my wheelchair, saying “you’ve got the latest technology” and gestured to my chair, so we said a few words about that, before he held out his hand and we shook hands, he congratulated me once again on my impressive work and then I backed away, bowed my head, turned and drove out of the room. They then took the hook off my jacket and put my MBE medal in a box for me, and I sat at the back of the room with my family. Prince Charles was so lovely, there was no divide felt between us, and he was genuinely pleased about what I’ve achieved and very genuine; I was ever so slightly worried about what to say to him, but our brief conversation flowed so effortlessly that I needn’t have worried. It was a very special moment which I will remember forever. Not many people can say they’ve met the Royal family, let alone to have talked to, been given an award by and shaken the hand of the Prince of Wales. In a strange but lovely twist of fate, Sir Jack Petchey was Knighted at that same investiture; he set up the Jack Petchey Foundation who give awards and do other work with young people in London and Essex, and I myself was a Jack Petchey Award recipient back in 2010 for endeavouring through adversity and achieving good GCSE grades despite doing my exams at home in bed having been very poorly and having tuition at home for two and a half years, and being a positive role model. It’s a small world, and it was lovely to be able to thank Jack Petchey himself for his work and his foundation, of which I was supported and recognised by for my achievements. 

It was a very poignant moment when the national anthem played at the end of the ceremony, though we weren’t allowed to sing along, and it made me feel quite emotional. It all started to hit me, what it meant, what had just happened, that I was part of the Most Excellent Order of the British Empire, and that people think me worthy of such an accolade. Not just my family, but the person who nominated me, I still do not know it was (if you’re reading this, you have no idea how grateful I am!), to the Cabinet Office for selecting me to receive an Honour, an MBE, out of (no doubt) thousands of nominees, which was then agreed by the Queen, and which I received from Prince Charles who was very impressed by my work and my achievements. It’s almost too much to process and take in, but my Investiture was a truly magical day and one myself, my mum and my Grandmother will never forget, nor will my nurse Faggie (who is the envy of the rest of my team of nurses!). 

(c) Palace Photos
It’s a fitting end to what has been a horrific 13 months, from mum’s brain tumour diagnosis in April 2015, her post-operative brain bleed and stroke in May 2015, her amazing recovery from nearly not making it through the night and not knowing if she would ever recover, and if so, whether she’d still be ‘mum’ and how much she’d be able to do, and to her setback fifteen minute seizure in February this year and risk of further seizures meaning she must take anti-epileptic drugs for the rest of her life. Then there’s my own battle, from my massive deterioration physically, to the recurrent episodes of sepsis (and many, many infections I’ve had that haven’t led to sepsis), to multiple hospital admissions and to completely losing over three months of my life being unable to do anything, not even use my phone or be awake for long; it’s been really tough. It’s been a very hard, emotional, desperate, distressing and frightening year since mum’s diagnosis, the surgery and its complications and much as she is so much better, she’s not quite but as near as she can be to her normal self after what she’s been through, for which I am relieved and so grateful and overjoyed. However much as things have got better, it has had a lasting effect on me and I suffer nightmares most nights relating to mum’s seizure and which take me back to the feeling of finding out she had complications after surgery and might not make it. The last 13 months have just been horrendous in so many ways (though there are still positives, the negatives have outweighed and overshadowed them) and I am just glad my MBE has provided such a lovely way to sign off a terrible 13 months. Much as I have achieved things in this time, from the BBC Three documentary, to co-chairing the event at the Department of Health in December, to reaching 200,000 views on my blog and more, and grown as a person more than I ever could’ve had I not faced what I’ve faced, having had to do everything for myself such as doing all my own phoning, chasing, liaising, finances, organising, ordering and so on, which mum usually took care of, and to be cared for completely by people I’d not met prior to mum’s surgery, it’s been a very tough time and I just hope the next 12 months and beyond will be the best that it can be. 

I have wonderful pictures to remember my Investiture by, some I will have to wait until they arrive from the company, others I have already purchased, but the images remain copyright to them so I can only use them for personal use and in talking about my MBE (“for news purposes”, as they put it). Here they are:

(c) British Ceremonial Arts Ltd
(c) British Ceremonial Arts Ltd
(c) British Ceremonial Arts Ltd
(c) British Ceremonial Arts Ltd
(c) Palace Photos
(c) Palace Photos
(c) Palace Photos
(c) Palace Photos
(c) Palace Photos
(c) Palace Photos
(c) Palace Photos
(c) Palace Photos

Monday, 6 June 2016

Supporting Unpaid Carers: What Happens When A Carer Gets Sick?

I’m not sure why society is not better equipped to support unpaid carers. Why they are so often undervalued. They save the UK on average £132 billion a year, the cost of running a second NHS, so why do we give them such little support? Carers need more recognition and they need support, so that they can go on caring, safely, for their child or loved one and continue to save the NHS all these billions of pounds every year. Paying out for support for carers to enable them continue caring safely is better than waiting until they become ill themselves or are no longer able to care for their loved one anymore (for various reasons, health, work and other commitments or simply through exhaustion) before supporting the carer, because the now-urgent large (possibly 24 hour) care package or care home fees will cost far more than the support and respite package ever would have to help the carer, and it could’ve kept the person caring for their child or loved one safely and saved them a lot of money in the long run. 

Carers give their all to their loved one’s care. Many parent-carers have a child with very complex care needs, their child is dependent completely upon them for everything, the parent-carers frequently have to learn specialist medical techniques to care for their child at home, as well as advocating for them and organising everything for them, which is a full time job in itself. Then there’s the people caring for their spouse, for their parent, young carers, and other family members, and then there’s the especially challenging task for someone who cares for a person who suffers from a form of dementia, as well as the high level of care needed by someone with a terminal illness, or a complex condition with high care needs. Caring by its very nature is challenging, but some conditions and care needs present more problems than others. Carers devote their lives to those they care for, and they do it with the love that a paid carer cannot give. Frequently people would much rather be cared for by a family member than a paid carer they didn’t previously know. Much as they can become like family - provided the package has continuity and isn’t different people on every shifts or visit like a lot of the call-out care companies and agencies provide - it’s still not the same. So why aren’t we supporting carers more so that they can continue to care for their child or loved one, and that the person can remain at home, a part of the family, so that the best quality of care can be delivered, but also save money in the long run. I must reiterate, unpaid carers save the UK £132 billion each year - the cost of a second NHS - so surely that means they deserve recognition and support that they desperately need?

However, what happens when carer becomes sick? What happens then? We have so little preparedness for situations like this, no one ever considers what will happen if an unpaid carer becomes unwell, and you can almost hear the groans of Local Authorities and Clinical Commissioning Groups as they’re left with the task of how to sort out a care package or care home for this person. And there’s the battle that goes on over who should fund the care, which doesn’t help. It makes care recipients feel like burdens when there’s a fight over who should be lumbered with paying for their care, and it makes us feel sad that, in ours and our carer’s hour of need, no one wants to take responsibility and help us. 

Why don’t we recognise, value and support unpaid carers enough? From parent-carers, young carers, family carers, friends who help with caring for someone; anyone has the potential to become a carer, but no one understands what it’s really like until they live it. It can be a lonely and isolating place. If the carer gets sick, everything is thrown up in the air and it’s extremely stressful for both parties. The carer doesn’t want to give up their role because they care for the person best because they love them in a way a paid carer can’t, and the recipient is now worried who will provide their care, whether they be able to stay at home, whether they will get to choose who cares for them and where, and will they care for them properly? So many terrifying questions run through your head. 

You see, I have lived this. I have experienced what happens when a carer gets sick, and I can tell you, it’s the most stressful and upsetting thing in the world. I have experienced horrendous things as a result of my condition, and endured physical pain that would leave most people curled up in a ball weeping, but when my unpaid carer, my mother, became ill, it topped anything I could ever imagine. It was the worst pain I have ever felt when she received her diagnosis, one that I had been suspecting for 6 months, but nothing could ever prepare you for the magnitude of it. It was the worst experience of my life. The emotional pain was felt throughout my body, the stress was palpable, and I will be honest with you, I didn’t think I could cope with it, I really felt like it was too much for me to handle. However, I had no choice, and we had to make arrangements and sort everything out. We had three stressful, upsetting, distressing, desperate weeks of uncertainty about my care, what would happen to me and how both mum and I would cope. Three weeks to sort out a 24 hour care package involving care that needs to be provided by specially trained nurses. It was a horrendous battle, and left us both physically, mentally and emotionally drained. A time where we should’ve been making the most of our time together before her surgery, was instead spent frantically sorting care packages, fighting battles we should never have had to fight, stressing over what would happen to me and panicking about how I would manage everything on my own. It needn’t have been that way, but that’s the way it was, the way it shouldn’t have been.

I want to share our story because I hope it will enlighten those in power to the struggles faced by carers and the person they're caring for, that it will challenge the way we think about unpaid carers, above all that it will lead to discussions that could lead to changes to make the system work and better support people and the unpaid carers who look after them.

I’m a 22 year old girl who takes her experiences and turns them into actions. I dedicate my life to making a difference, doing a lot of charity, health and disability work, for which I received my MBE in the New Years Honours 2016. I suffer from numerous complex health conditions which mean I am disabled, seriously ill and life-limited. These conditions include Ehlers-Danlos Syndrome, Autonomic Neuropathy, multiple organ failure (type 3 Intestinal Failure and neurogenic Bladder Failure) and an undiagnosed neuromuscular disorder, amongst other conditions and complications. They result in numerous symptoms that I must deal with on a daily basis, and mean I receive all my nutrition and fluid directly into my bloodstream (TPN) via a line into my heart, due to being unable to absorb anything via my digestive system. I also have a PEG tube draining my stomach continuously, and an Ileostomy and a Urostomy. I am wheelchair bound but forced to spend the majority of my time in bed. 

I became ill over 8 years ago now, in January 2008, when I was 14 years old. I was born with some of my conditions and had problems throughout my childhood, and progressively deteriorated from the age of 11 until I became poorly and wheelchair bound in 2008. Our lives ground to a complete halt. It took 10 months to receive a diagnosis (an accurate one, anyway) and my mum fought every system to get support. I was labelled lazy and regularly told this by professionals, and another label given was that I had a school phobia - even though I love school and was continuing my education at home despite no support from my school and their refusal to refer me to for home tuition. Mum had to continuously fight to get support, referrals and treatment, she was my advocate as well as my carer and my mum. 

My mum cared for me 24/7 for the first seven years and five months of me being poorly. We had carers but they couldn't care for all of my needs, namely the medical ones, meaning even with carers mum didn't get a proper break. She had to do all of my medical care outside what the carers could provide - and do everything for me when carers weren’t here - so having carers didn't mean she got a break or could take a day off caring. She still had to care for me round the clock. This became even more apparent when I was started on TPN in May 2011, which is feeding directly into the bloodstream via a permanent central line in my chest, the tip of which sits just inside my heart. The techniques needed to care for this line, to set up and disconnect the TPN feeds and to administer medications via this line is something not all nurses are able to do. It requires specialist training, which my mum was trained to do so that I could come home from the hospital on TPN. The line must be accessed under strict aseptic (sterile) conditions using the aseptic technique, a special technique which keeps the line free from contamination with bacteria and involves multiple stages. Any bacteria getting into the line could be fatal, as the bacteria, once in the line, is then pushed into the heart and pumped all round your body in seconds, leading to life-threatening bloodstream infections and sepsis. There are other risks, and TPN by far isn’t a cure, but it keeps me alive; without it I wouldn’t survive. This meant the carers were unable to touch my line nor able to set up my feeds or administer medications, only mum or a trained nurse could do it, but they wouldn't provide nurses to care for me at home, so it all rested on mum.

Once I went onto TPN, and then when round-the-clock intravenous medications were needed to be given through this line, it meant mum couldn't have a break. She'd not had a full day off for over seven years before disaster struck. Over seven years of 24/7 care with no holiday, no break, no time off, and not only that, she also worked full time up until February 2014 when she was forced to give up work due to my increasingly complex and demanding care needs. My mum is a single parent, my sister works full time and has her own life, and so there was no one else other than mum who could do this round-the-clock medical care. The carers could only give mum a few hours off at most between medications, which were two-to-four hourly, so mum couldn't do much. That doesn't include all the coordinating and liaising; organising appointments, meetings and visits; ordering supplies and medication; sorting deliveries; and driving me to appointments in London at least two or three times per month as well as being a mum to my sister, a daughter, a friend, and running a household. She was working 24/7 to care for me, doing IVs all day, emptying and changing my stoma bags round the clock (including getting up multiple times in the night) and even sleeping on my floor when I was poorly. Even in hospital she needed to stay with me and perform all my care as not all ward nurses are trained or will use the proper technique with my line and they don't have time to meet all of my needs. Mum never, ever had a break. 

Mum was my full time carer for seven years and five months, that was until disaster struck. In April 2015 mum was diagnosed with a benign but big brain tumour, which would be tricky to remove. She needed surgery urgently and we had three weeks to sort out a package of care for me. I had a Personal Health Budget already but that only allowed for some hours with a carer, not round the clock care with ITU nurses to administer IV medications and do my TPN and all of my other care. We turned to the local Clinical Commissioning Group whose idea of a solution was for me to be placed in a care home. The only two that would provisionally (but not definitely) take me were an old people’s home or a learning disabilities care home, who would have to be specially trained to meet my needs, but I wouldn’t have the one-to-one care I need. Going into the home would mean I would not be able to go out at all, not be able to visit mum, not be a part of my family, not be able to do my charity work, not see my assistance dog in training Molly, and I wouldn't even be able to attend hospital appointments - all of these were considered luxuries - unless I could prove that each one was urgent and vital for my immediate survival. We politely refused. This game of trying to convince me my only option was a care home went on until eventually they backed down and put together a package in the nick of time, which was for six weeks only as they felt mum would be well enough to care for me again, round the clock just like she used to, within 6 weeks of major brain surgery. This package started the day of mum’s brain tumour removal surgery; talk about cutting it fine. I'd had no time to get used to and comfortable with my ITU nurses and overnight carers beforehand or to iron out any problems with mum’s support. I was thrown in at the deep end, with complete strangers caring for me, at an extremely stressful and difficult time. Don’t get me wrong, I have lovely nurses, but it was exhausting having to explain every detail of my life over and over, correct them when they made mistakes which I didn’t feel comfortable doing, trying to get things done properly, trying to organise with the agency for shifts that would fit round my appointments, and trying to find people to drive my Motability vehicle to take me to the hospital to visit mum every day, and to my own hospital appointments, since my nurses won’t drive my vehicle. 

It’s just as well I refused to go into a care home, as disaster struck once more. Following mum’s surgery, which was a success, she suffered a bleed on the brain and then a stroke. She was not there at all for weeks, and had a lengthy recovery. They didn’t know if she’d survive the first night, and when she did, how many abilities she would regain, and whether she’d be the same person she was before. To see my mum combative, not aware of much, unable to speak or communicate at all, her right arm clamped to her chest, her legs stiff out straight, and her left arm very weak, was very distressing. We had to feed her - talk about a role reversal, mum always cared for me, and now I was feeding her lunch, putting lip balm on her, massaging cream into her hands, holding her hand and supporting her - and she needed nurses to do everything for her. Mum slowly made good progress, she moved out of Neuro ITU after two weeks, spent two weeks on the neurological ward where they pushed on with her rehabilitation at the same hospital, then moved to the stroke ward to continue her rehabilitation at the local hospital.  At first there was no communication, then she would squeeze your hand to answer, then she could answer yes and no, and eventually she could speak again, but she had to start again from scratch. They had to get her sitting up, at first she had no head control so I brought mum one of my own neck pillows up to support her head in bed and when sitting up. I would play her music that she liked to try and get her brain going and see if we could trigger memories and bring mum out again. Once out of ITU she was much more aware of her surroundings, though she had lost 4 years of her life. She had no recollection that I was on TPN, or that I had stoma bags, and so many other things she lost, but has slowly regained some memories, though it’s still patchy, and she struggles with her short-term memory and struggles to say what she thinks at times; she can form the reply or sentence in her head, but sometimes struggles to get that sentence vocalised. She’s had a very lengthy recovery, and has had to work very hard to get where she is, though she had a setback in February this year when she suffered a 15 minute seizure - which I witnessed - which means she could have further seizures, but they have her on an anti-epileptic drug to try and make sure she doesn’t have another one. Hopefully it was a one-off though. However much as mum has made an amazing recovery, she still struggles, and, sadly, she can’t care for me. It’s just as well we fought hard for the package I have, which has had to continue and is still ongoing, as had I gone into a care home, I’d have been stuck in the home for the remainder of my life. Stuck with no outings, never to be a part of my family, I’d lose my beloved charity work, and wouldn’t be able to train and walk my dog Molly. We won that battle after a fight, but it was a fight we shouldn’t have had to win. 

Why did mum not get the support and break she needed prior to her brain tumour? Why did it take this tragedy to get a care package that meets my needs? Why is it okay to take any person with complex needs which will need a more expensive and specialist care package and immediately put them in a care home because they aren’t straightforward, and it’s easier for them? Why did I have to be made to feel like a tremendous burden, a person who wasn’t worthy of a life or quality of life, that it was satisfactory to put a 22 year old in a room in an old people’s nursing home and never let her go out or participate in life again? The answer is, it’s not okay, but this is where the system fails. We have all these targets, patient-centred care, personalised care, the shift towards care in the community, the right to choose our treatment; and yet there’s a secret battle going on that no one knows about, where the targets get thrown out the window and care homes are presented to people as their only option. It shouldn’t be happening. There are situations when a care package in the home wouldn’t be possible or suitable, and I am not saying all care homes are bad, but for a 22 year old with an active social life, doing charity work and fighting for the rights of others, to nearly have her rights and her life taken away from her; that’s not okay. Especially not to put a bright, articulate, socially active, capable 22 year old young lady in an old people’s nursing home, or a learning disabilities home; if I was going to go into a home, it would need to be suitable for my age and level of ability, incorporate my right to participate in the community, be a part of my family, allow me to go out, to socialise and to continue make a difference with my work, and to still have quality of life. They weren’t suitable places for me as a person, a 22 year old, someone who needs people her own age and of similar ability and with people who had a similar outlook. My case has proved that patients like me can be managed in the community, that unique packages like mine can be built, and that they can work and are a viable option; it’s not right for everyone, but it can be done. Soon we will make the transition from a Continuing Healthcare/CCG funded and controlled, agency-provided package with an ITU nurse with me from 7am-11pm and a carer overnight 10pm-7am, onto a Personal Health Budget with the same hours but that I am in control, that I can choose and employ my own staff directly, that I can make sure the nurses are suitable and are prepared to do the things I want to do, who will take care of my equipment, and who will become part of our family. I cannot wait for that. 

So, what does happen when a carer gets sick? I hope my story shows what really happens when a carer gets sick, and that people will be made aware of what happens, and how the system fails patients and unpaid carers at the most vulnerable, traumatic and anxious time in their life. I do hope there will be a change in the system, that the things I have talked about will spark discussions and my message will get to the very people who need to hear it; the ones who need to make changes, and have the power to do so. I hope in future that people won’t go through this secret battle that no one knows about; the one we won, but should never have had to fight, all because my sole unpaid carer, my mother, became sick.

Please support Carers Week (6th-12th June 2016) by going to their website here

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