I am getting some very interesting invitations at the moment! A little while ago Rebecca Myers (
@RivkahMiar) contacted me to ask if I would run a Whose Shoes? workshop at the Florence Nightingale Foundation Annual Conference in London 27/28 February 2014. When she explained that this is arguably THE conference for passionate nurses and health professionals, of course I was delighted to say yes! When we got chatting, Rebecca started to tell me her own story. It was shortly after I had published the very popular “Views from a hospital bed” blog by Delia Stearnes and I realised that Rebecca had an equally interesting, moving and important story to tell. Thank you Rebecca for your honesty and courage in sharing this.
Rebecca’s story struck huge chords with me as we too have had the experience of the brutal Continuing Care assessment. I publish it very deliberately today as we will be running our #whoseshoes #dementiachallengers workshop at the prestigious Dementia Congress #UKDC2013 in Nottingham. Stories and experiences such as this are what drive our work for joined-up, high quality support and a good quality of life for EVERYONE living with dementia and their carers…
“Someone I met through Twitter, @whoseshoes, asked me recently if I would write my story and I have been thinking about it ever since. I kept thinking who would be interested in my story but then realised it’s not just my story and that’s why I need to write it”
My mum was officially diagnosed with early onset Alzheimer’s at 58 but probably was showing the symptoms 2 years before. The forgetfulness, increased anxiety, and struggling with simple tasks was nothing compared to what was to come over the next 14 years.
My father had retired early at 55 with plans for them to enjoy the years ahead travelling and visiting grandchildren but the reality was very different.
As the symptoms became more noticeable and my dad was unable to hide them from my brothers and myself I, being the health professional, took my mum to see the GP to ask for help. This was in 1999 before the great work that has now been done raising awareness. The GP consultation was not a helpful one. But I’m not one to give up easily and insisted she was referred to see a psychologist and to have a MRI which was done.
I know I am very lucky to have ‘contacts’ in the system both clinically and managerially who I can go to for advice and support if needed but am fully aware that many don’t so I tend to follow the normal routes. However over the next 14 years there were a handful of times when I called upon those people – they know who they are – and my family and I will always be eternally grateful. What I also know is those people would do the same for all their patients and many others like them which has helped me keep my faith in the system even when at times it was severely challenged…. I digress!
So after tests and referrals to tertiary centres the diagnosis was made – early, rapid onset Alzheimer’s disease.
My grandmother had developed dementia in her mid 70s so my father knew what lay ahead and insisted my mum was never told. Something which to many seems outrageous and something I struggled with myself but I loved my parents very much and knew it came from a place of love and fear. As childhood sweethearts and nearly 40 years of a very happy marriage, who was I to say that wasn’t the right thing to do?
And so we tried to come to terms with the diagnosis and make the most of the time we had. The #dementiachallengers on Twitter will understand this and every time @seatoshore or @kimbo put up a picture I smile with them as they make the most of their moments. But this is not just a sentimental blog or a romanticising of life with dementia. The story has a dark side, which highlights the failings of a system that many others and I work hard to try to improve.
As mum became sicker, she began to experience terrifying hallucinations of people trying to hurt her. She became paranoid and started to see the man & family she loved as strangers making her do things she didn’t want to do. Many times I would find my dad at the bottom of the garden hitting his head against a tree with the pain of his loss and frustration as he was trying to cope.
I gave up work to help but we couldn’t manage this on our own and tried to get help but she didn’t “meet the criteria” as Mum wasn’t old enough to access the specialist dementia services which were for the over 65s and the only other place was the local psychiatric unit. I had removed my grandmother from there as she had fallen and sustained a small fracture of her hip without anyone knowing and subsequently mobilised despite crying out in pain. She was labelled ‘difficult’.
My challenge that my mum had a neurological disorder NOT a mental health one fell on deaf ears. It was then my dad met someone by chance who told him about the Alzheimer’s Society and we met one of their advisors who became a lifeline. Their support practically and emotionally filled the gap the statutory sector left and we remain indebted to that organisation.
As things deteriorated over the next 7 years we could no longer cope. My father was exhausted with the sleepless nights, mum wandering and her crying and screaming which only diminished with heavy sedation, This was just as devastating but in a different way. I had two small children and couldn’t be there 24/7. We knew she needed full time carer support and in asking for help we met again the response that “she didn’t meet the criteria”.
But as I said, I’m not one to give up easily and so read everything I could on Continuing Care Assessments and insisted this was done by an expert in Alzheimer’s care and that my dad and I were equal partners in the assessment. The consultant elderly care psychiatrist did a domiciliary visit and agreed her needs were severe and mum was recommended full funding to go to a specialised care home with people who understood the condition and her needs.
This was not about the money but about the NHS fulfilling its responsibilities for providing healthcare on the basis of need – a principle that had led me to train as a nurse and subsequently work as a manager for over 25 years. I strove for that everyday for patients and families in my work and wasn’t going to settle for anything less for my own.
But that wasn’t the end of the story. For the next 7 years my mum, whilst calmer in a specialised environment, deteriorated as the disease progressed. My dad visited every day and me every week to spend time with her and make sure she was well cared for which she was.
In January 2011 my father rang me very upset saying he had received a letter to say that “following an assessment which he had ‘refused’ to attend my mum had been reassessed and was no longer eligible for continuing care as she didn’t “meet the criteria”. In addition, “he would now have to contribute to her funding which was likely to be in the region of £2000/month”. Since mum had moved he had developed multiple myeloma and was worrying about who would pay for mum’s care if he died.
The next year proved to be one of the most difficult as we challenged the assessment, which on review was inaccurate and inadequate, and the decision that had been made on the back of it. It was like a repeat of when she was first diagnosed when we were having to face the fact that we were losing her and having to ‘justify’ why we should have help.
We found ourselves as a family caught up in a callous, dehumanising, bureaucratic process where my mum became a statistic in a set of continuing care figures. Something I observed when I read the public board papers of her commissioning organisation!
I wish to recall two incidents that for me highlight why things need to change in the Continuing Care process.
The first was a 4-hour multi professional meeting with: my mum’s ‘case worker; a mental health nurse; a social worker, and a nurse from the care home. My family, including my husband who is a GP, sat and listened to the ‘professionals’ view on what my mum could and couldn’t do against a list of domains and thus why she wasn’t eligible.
I became increasingly distressed, as we had to describe in detail why she couldn’t look after herself or communicate what she needed ( she was now in a total vegetative state) and be told this wasn’t the case. There was differences in the ‘professionals’ view but I couldn’t understand how my fellow health and social care professionals in the room couldn’t see what we could see or see it differently. I then asked a question … “You have all met my mother, haven’t you?”
Embarrassed silence…… Then the lead nurse said she had seen her a while ago but had read the care notes.
I was totally shocked. Here were people who had no or minimal, experience of my mum’s care telling us, her family who had lived with the situation every day for 14 years, that they knew best. I stopped the meeting and said I wasn’t happy for it to continue until an expert in Alzheimer’s had assessed her again and that their assessment was included in the panel review. I also insisted that they come upstairs and see her.
This was agreed, and following a domiciliary visit three months later, the elderly care consultant recommended in discussion with my dad and us that my mum was placed on an end of life care pathway and, should the situation arise, not be resuscitated.
Even after 14 years of watching someone suffer this is not an easy thing to go through and watching my dad as the consultant talked broke my heart. The report was written and sent through to the lead nurse – surely this would be the end of it but no……..
We received a letter to say that they had received the report and revised some of the assessment but the recommendations remained and they would be happy to meet with us to explain why? I was totally shocked.
The meeting was set for February 2012. The next three months were like something out of film – you couldn’t make this stuff up.
At the beginning of November I received a call in the early hours to say dad had been admitted into hospital – he’d been passing blood in his urine. I knew what was coming. After various initial tests he was sent home whilst we waited for the results.
At the end of November whilst waiting for his results I got a call to say mum had been admitted to A&E having aspirated. Arriving in the A&E I found she had been given prophylactic antibiotics to stop her getting a chest infection – she had been given active treatment even though she was on an end of life care pathway. Reeling from seeing her and my dad sitting outside A&E facing her and his own death I had never felt such pain.
We got my mum finally settled in a bed and a fantastic junior doctor visited to talk to us about the treatment plan. I explained the conversation we had with the elderly care consultant and he handled everything sensitively and compassionately and we were moved into a side room.
The next six weeks were tough but the NHS staff at the hospital and the care home pulled out all the stops and mum was transferred back to the home where she died peacefully on the 27th January 2012. So that’s the end of it you think……. But no.
The meeting has been set for February and the week before I hadn’t heard anything. I assumed it had been cancelled so emailed only to be told it was going ahead and “they will review with me their assessment of my mum’s on going needs”.
Nothing shocked me any more and so, in discussion with my brothers and my dad, I agreed to go on my own. Right up to the last minute I kept thinking they would ring me and say how sorry they were to hear what had happened, but no.
I sat down and waited for the lead nurse and her manager to arrive. They come and reiterated that the purpose of the meeting was to explain to me what my mother’s needs were. At this point I interrupted them and said she no longer had any needs as she had died three weeks ago.
Embarrassed silence followed by a defensive reaction that “no one
told us”. We later found out the home had notified them the day
after my mum had died.
I won’t go on as I don’t want to portray these people as uncaring individuals as I don’t believe they are. They were two nurses who, like many others, had lost sight of what was important. They had been directed into a way of behaving by a system that demanded the “criteria needed to be met”.
At the end of the meeting they were clearly upset at what had happened to us and apologised profusely.
I said we wanted to meet with their CEO & Chair not to get them into trouble but to highlight the failings of the system, which we did and agreed for some changes to be made. I am not convinced these have happened but I left that to the conscious of those leading that organisation. The irony of this was that the organisation was going through an assessment to be authorised to practice – they had to meet the criteria!
We haven’t followed up on this as Dad’s test proved to be what we feared and the next year was about making the most of the moments with him before he died a year and a day after my mum. Childhood sweethearts reunited.
The thing is, whilst this is my story it is not just mine. Too many others out there go through this cruel and badly managed assessment process for continuing ‘care’. Those of us going through it can try to feedback and highlight the problems, but it’s difficult when you are also coming to terms with losing your loved one. Those of us in the system can make changes in how this process is managed and make sure that no one else goes through what I and so many still are having to face.