What if we viewed lived experience as an asset? As an asset of professional, economic,…
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.