Saturday 22 June 2013

No one should have to pay for End of Life Care.........

This week saw the publication of  "People's final journey must be one of their choosing...." Ways and Means by Ally Paget and Claudia Wood.

This research was commissioned by Sue Ryder, as they describe "We are concerned that the system has lost sight of the individual when it comes to their care at the end of life and the current model is not sustainable. Dignified and quality care is still not up to standard across all settings, care is not coordinated, and individuals and their families remain unsupported at the most life changing and emotionally challenging time."

So much of this research rang true for us as a family, it was very sad reading but at the same time came relief that we were not alone and with it hope that its findings would be used to improve care for others with dementia at the end of their life.

My father died at home with my mother and I with him, however to get him there had been a battle of enormous courage mainly on my mother's part. His final journey started in hospital some 11 weeks earlier after being admitted to hospital with pneumonia. On admission he was commenced on intravenous antibiotics and fluids and after two weeks did appear to be making an improvement. It was at this point that discussions around discharge home and care packages were started and as my dad was already known to social services with a care package already in place we thought the process would be pretty straightforward... how wrong were we!

We knew that dads care needs had increased, he was already a frail man when he went into hospital needing 24 hour care provided at home by my mother. It had always amazed me how she had managed up until now with only a 30 minute visit in the morning and a 20 minute visit in the evening from carers. Much of this was driven by the fact that social care is means tested and so dad had to pay for his own social care. I lived over 60 miles away from my parents and with no immediate family near by the responsibility of caring for dad lay with my mother, something she was happy to do as for her my father had given her "many wonderful years".

It was during this period of time in hospital that Continuing Health Care Funding (CHC) was mentioned and as dad had tested positive to the first assessment process we were asked whether it was a route we wanted to go down. Although a nurse I had little knowledge of what this entailed and asked if someone could tell us more about it. We were told that it was an assessment process of my dads health care needs and if we were successful then dads care would be paid for, however it was stressed at this point that not many people were successful in qualifying for it and obtaining the funding. Mum and I had a chat and we both felt that dad had worked for fifty years and as he had paid for his social care up until now if there was an opportunity that health would now cover that cost for him to live his days out at home then we should go for it.

What we didn't realise at this stage was how difficult, long and a, traumatic a process this was to be and that by the time we had a decision some 5 weeks later dad would be needing end of life care. For mum and I the decision as to whether we made the right choice will live with us for ever. So why did it take so long and what happened in that time...... good question, but I will have a go at explaining what happened.

We made the decision to go ahead and ask for dad to be considered for CHC funding, what we didn't realise at that point was a multi disciplinary meeting to discuss his assessment had been booked with a date in the diary of everybody except ourselves. We were given no written documentation on the procedure and the first we knew about it was when a nurse mentioned to my mum the day before that the meeting was going ahead the next day and it was noted that my mum had declined attending.

My mum rang me much upset saying that she didn't even know the meeting was the next day let alone had declined to attend. My mum and I had power of attorney and welfare for my dad and had wrongly assumed that we would be involved in any decisions around his care. My father had end stage dementia and did not have the ability to make decisions on his care and would not have been able to give verbal permission for this process to take place.

The next morning I rang the ward voicing my concerns and was then given the number of the member of staff I needed to speak to. I stressed that my mother and I wanted to be at this meeting so we could represent my father and be his advocate as my mother was his main carer. The meeting was postponed and re arranged when I could be there to support my mother.

The day of the multi-disciplinary meeting I travelled down and was met on the ward by the social worker who was meeting my dad for the first time before going into the meeting. She wanted to see what my father was like and speak to my mother.

We were taken into the staff rest room where the meeting was to take place and present in the room were the lead for the CHC assessment process, my dad's physio, a nurse and the social worker who had just met him. The lead started to explain the process to us all and at this point emphasised that my dad was highly unlikely to be successful in getting funding for his care and I felt was implying we were all wasting our time. Not a good start!

And then the picking apart of my dads care needs started according to the domains we were looking at. It felt like a process, we were just an inconvenient number causing extra work in paperwork that would always have the same outcome- no funding. So lets look at my dads care needs in more depth at the time of the assessment. He was totally bed bound, could not obey commands and needed turning regularly on an air mattress. The only way to get him out of bed was to use a hoist which was extremely difficult as he was frail and unable to understand direction. In the chair he needed pillows to support him otherwise he would lean to one side.

He wore pads as he was unaware of the need to pass urine and was unable to feed himself. His swallow was impaired and had to have thickener in his drinks and pureed diet which were given to him by my mother. His appetite was low and he was loosing weight something we were keen to emphasis at this meeting and common with advanced dementia. His medication needed to be crushed and given to him and much of the time he would spit it back out. He could not be left unsupervised as was unable to do anything for himself and we felt as a family his care needs were high, he was at risk of malnutrition, dehydration and pressure sores and prone to recurrent infections. He was also on Warfarin for Atrial Fibrillation and a previous heart attack and in recent years had been treated for bladder cancer.

However none of this seemed to be defined as a health need, sadly because he was bed bound he was a low falls risk so scored low. Where my mum had looked after him so well prior to admission he had no pressure sores so again scored low. He did not shout out or cause problems for the staff to manage as he was so frail however again this scored him low.

Then came the question of weight, how much did he weigh? This needed to be done as part of the assessment. It was at this point we were told they were just weighing him now so it could inform the meeting. How much did he weigh on admission, well they had that in his notes so that was ok, however when the weight of that day was given it turned out my dad has lost a considerable amount of weight since admission and that this had not been picked up as he had not been weighed in the 3 weeks of admission. It was at this point that my mother and I burst into tears, it was becoming unbearable, this was a process driven by the need to tick boxes and complete forms. It was not about what was best for my dad. For us his care needs felt huge, the responsibility and worry for my mother had been great prior to my dads admission and here they were saying that my dads care needs were "basic" and could easily be provided by domiciliary care. How dare they say his care needs were basic when they hadn't even bothered to weigh him for 3 weeks and flag up what we had been telling them that he was loosing weight. Even as a health care professional nothing has prepared me for the totally distressing experience that meeting was, we felt like frauds, what right did we think that our husband, father with his end stage dementia would need anything other than "basic care". The meeting was over he scored border line, we were told the paper work would be prepared and the final decision would be made by the PCT CHC Team.

Then began the wait, nothing could be done until a decision had been made as to whether my father qualified for CHC Funding. However sadly this was to be a long wait, 5 weeks to be precise during which time my father's condition deteriated further, he contracted another hospital acquired pneumonia and became very unwell. I tried to speed things up during this time, I rang the PCT direct myself to ask them after 2 weeks whether they had received my dad's paper work, they had not, they didn't even know anything about him. I then informed them of my concerns as my father was now very ill and they were talking about putting him on the Gold Standard Framework for End of Life care, we wanted him to be at home with us as we didn't know how much longer he had left. They said sadly they could help until the hospital had informed them of my dad.

I then rang the hospital to speak to the lead CHC assessment person who had only just finished writing my dads report and would be faxing it over to the PCT as soon as they could. I explained my concerns that my dad was very ill and that we wanted to get him home as soon as possible.

All of this fell onto deaf ears, it in fact took a total of five weeks to get the decision which we heard finally from the hospital social worker who told us my dads application had been unsuccessful and that his care package would now come under them. Dad had been in hospital at total of 8 weeks at this point, my mother and I were at our wits end, what had we done putting dad through all those extra weeks in hospital all for nothing. Five weeks of his life that we can never get back whilst health and social care fight over who pays for his care, where is the person in all of this, where is what is best for them?

Mum resigned herself to the fact that we had lost and that she would fund dad's care, the priority was to get him home to live out however many days he had left. However then began our next battle, surely not again when time was so precious to us all. It turned out that dads care package from before had to reviewed and arranged through the hospitals social services team. What made this so bad was to hear that in doing so dad could no longer have the care agency he had been using for the previous 2 years. Dad would be leaving hospital with an increased care package of 4 visits a day which meant it would take him up to his threshold of weekly payment contributions so that anything over and above that social care would pay. Bearing in mind my dad would still be paying over £1,000 a month for his care.

For someone living with dementia continuity of care is so important, dad had had the same carer every morning for 5 days a week for the last 2 years. She had become like part of the family and although you are supposed to keep a professional distance its very hard not to become friends with the carer that you rely on so much, who comes to be part of your life, is the first person you might see after a sleepless night and is the one always there for you day in day out. For my mum this was a huge blow, not only was she trying coming to terms with the fact that my dad was now dying, but also they were taking away the only familiarity and support they both so needed at this time. Mum felt like a stake had been driven through her heart, her beloved Ray was dying and her carers were being taken away too.

I think this is the cruellest thing you can do to anyone and their family at the end of their life, it didn't even cross my mind to fight the decision I felt we had no choice. However sorting out the care package was going to take time, time my dad didn't have and my mum had reached the point where she had had enough. She didn't want my dad to die in hospital she wanted him home surrounded by familiar sights, smells and love,  so much love. She decided to arrange her own care package with the agency she had used for the last two years, she rang them up and arranged for 4 visits a day agreeing to pay them direct and the proviso was once the new care package from the hospital social services team was in place the new care team would have to start.

We got dad home, he was in a hospital bed in the dining room overlooking the garden. We wanted him to feel at the heart of the family home, it was important that he didn't feel shut away or isolated alone upstairs. The first week he had the carers from his regular agency and the children and I went down to stay at the weekend to be with them both. The new care agency was due to start the following week, however we had a name of an agency but no one had made contact and we didn't know who was coming if any one at all the next day.

I decided to ring the duty social services team to find out whether anyone was coming the next day, obviously this was hard as it had not be arranged by them. However the lady managed to find out who the agency was and I voiced my concern that no one had made contact with us and as I was having to travel home that day I needed to be assured that carers were coming into to help my mum the next day. I also voiced my concern that an assessment of my dads care needs had not been made and duly that afternoon an assessment was arranged for the care agency to come out and meet my mum and dad to ensure the necessary care package was in place for the next day. We also wanted to know who this agency were, we had never heard of them, didn't know if they were any good and when you are talking about a precious life as we are in these situations we need assurance that our loved ones are safe.

The lady arrived that afternoon and thank goodness I had asked her too as what was so shocking sadly was the fact that the agency had no idea my dad was so ill or even that he was on an end of life care pathway. The information the social work team from the hospital had sent the agency was 6 months out of date when my dad was mobile and walking out to the bathroom added by the carer. There was nothing in the paper work they were sent that would have led them to believe my dad was in a hospital bed, needing total care provided by 2 carers four times a day. What this meant was that the care agency then had to try and arrange a care package for my dad on a Sunday afternoon that would provide the level of care dad needed from the next day. To say this was distressing for all involved was an understatement, mum was already very upset with loosing her previous carers but to have this happen now at a time when she felt so vulnerable and was paying for his care was very sad to see.

However we were lucky the agency does deserve credit because the manager did sort out the care package for the next day against all the odds. They arranged for carers that always worked in pairs to look after my dad so he only ever saw four carers over those two weeks that he had left before he died. The carers were lovely and we are thankful for that, they were gentle and caring of my dad and they were lovely to my mum.

I contacted the community team in the first week to let them know dad was out of hospital and they came to do an assessment. They felt at this stage a visit once a week from the community team was enough, which for me was as a surprise as I felt dad needed more input, however when I questioned this I was told they felt my dad looked "quite well". It is at this point that I have one particular nurse who I will be ever thankful to. She had come out to take my dads blood for his INR check as the phlebotomist was off sick and what she saw had shocked her. She was visibly upset to see how my dad had deteriated, she had seen him prior to his admission to hospital when she had done his blood at home. She was so shocked that she immediately arranged for her boss to come out and see my mum and dad an another assessment was done. They decided that they would visit every couple of days to check on how things were going. Sadly by the next week my dads condition had deteriated further and my mum called the community team to visit. Dads swallow had finally gone and he was now unable to take any foods or fluids orally. The GP visited and the sad decision was made to make my dad as comfortable as possible for the remaining days he had. I came down to stay so I could support my mum and be with my dad at the end.

A pump was commenced with pain relief and sedation to keep my dad as comfortable as possible, it was set for a 24 hour period. The carers continued to visit four times a day helping us to turn dad and change his position. We played his favourite music and some friends and family came to say their final goodbyes. The community nurses would visit once a day to change the pump ensuring everything was prepared for the day ahead. They were a small team of nurses providing a service up until 7pm each day, after that it was down to the out of hours on call doctors if you needed help. It was the nights that we found the hardest and the longest and for the final 3 days of dads life the community nursing team provided us with a health care support worker to sit with us during the night. It felt very lonely those last few days, we are a small family, my mum is an only child and so we were not lucky to be surrounded by lots of family to help and support us. For us the four visits a day from the carers became a life line, they even got us essentials like bread and milk. The community team were there but you had to call them if you needed them their priority and their main visit was to change the pump once a day. They simply did not have the resources to provide further support to us. We asked about hospice at home as we had a hospice in our village however sadly it was only available to those with cancer.

The community nursing team even tried one last attempt at getting continuing health care funding for dad and even 24hrs before he died they still turned him down. They said that the community nursing team visiting once a day to change the pump and the night sitter for the last 3 nights was the health funded contribution to his care.

The night dad died was very hard, the GP had been visiting each day and we knew we were near the end. As the evening drew in we waited for our night sitter to arrive and keep us company. Mum and I never slept or washed from the time dads pump was started, we sat by his bed side holding his hand the whole time. We would take it in turns to make cups of tea, but neither of us felt like eating. We both turned to twitter for its continued support, it had been a life line to us in the last year of dad's life and had become even more so in his final hours. In those final few hours as my dad's condition deteriated I needed some reassurance that we were doing the right thing, it was very late at night and I decided to see if by chance a twitter friend was on line and they were. They know who they are but I can't thank them enough for providing the reassurance I so needed that night, for speaking to me on the phone and giving my mum and I the strength to get through those final hours.

Dad passed away just after midnight on the 1st September 2012 being hugged by my mum and I.
 A light went out in my heart that night........

What I now ask is why should anyone at the end of their life have to pay for their own care to die at home?

Many thanks for listening

Sally-Ann xxx



  1. Such a powerful blog, Sally. Thank you and your Mum for sharing your story - both at the time through Twitter - and now, in more detail, through your blog.

    As you know, this strikes huge chords with me as we went through a very similar experience, grappling with the undignified and painful system that is called Continuing Health Care funding. Nothing more can be done for our loved ones who have died. I just hope this will change for people in the future.

  2. Dear Sally-Ann,
    thanks for putting together the story of Ray; sadly I expect others will have similar ones.
    The courage of your mum and you did make a difference in the end it is the lack of courage and imagination by other health 'professionals' that makes me so sad this morning.
    I hope the Demos Sue Ryder report makes a difference; in the meantime I hope other colleagues that read this will make the effort to get it right each time.

  3. I'm crying reading this, this is absolutely heart-breaking. Thank you for highlighting this. So sorry for your loss. x

  4. Many thanks for your kind messages to my mum and I. The real hero in this story is my mum who cared for my dad with little help or support. Her wish and my dads was to live at home right until the end. Many people end up in nursing homes not because its their families wish but because there simply is not the resources in the community to support those living with dementia and their families. In my opinion this is a false economy as proactive long term management and support in the community would reduce crisis admissions to hospital. My vision and one I am determined to see happen is to have specialist dementia nurses within the community who with the multidisciplinary team will care for individuals from diagnosis until end of life. Every one will have a care plan with step up provision built in as required. The service will be proactive not reactive, the family and individual with dementia will own their care plan and it will not only have medical information but a holistic person centred record of their life, loves, and wishes. Everyone will have one dedicated contact person hopefully the specialist nurse however their is an opportunity here to think outside the box and have a whole team approach with intergrated health and social care. Any one who is put on the end of life register or gold standard framework should be entitled to free care. No one should have to pay to die at home or in a care home. This is my vision and I hope those that can support me in this will. Many thanks Sally-Ann xx

  5. This is shocking but doesn't surprise me. The NHS are actively AVOIDING their responsibilities in funding health care. I have experienced this myself. My great Uncle of 103, blind, deaf, Alzheimers, became aggressive, doubly incontinent, on thickened liquid diet, lost loads of weight, talking incoherently, in and out of hospital for pneumonia etc etc = NO HEALTH NEEDS apparently!! This is criminal but people get more up in arms when their car insurance doesn't pay out.
    I thank Angela Sherman for her monthly update magazine Care to be Different for highlighting this massive injustice to the elderly,sick and dying out our 'civilised' country. Cradle to Grave? Don't believe it.

  6. Sally-Ann, I've just read this again for a second time, same reaction - tears of anger and frustration that this should be your experience, your Dad's and of course your Mum's. Unless you've experienced something similar I'm not sure many people truly understand how wholly consuming caring for and supporting someone is, when they're well and more so at the end of their life. No-one should have to go through the experiences you describe, we've got something terribly wrong when people can't look up above the checklists and see the individual.

    To some extent it's not my place to have a view, but for what it's worth, I truly believe that you and your Mum did exactly what was right for your Dad - you did your best, and most importantly you managed to get him home, to die surrounded by those who loved him. Please don't doubt that you did everything you could, and that you made the right choices at the time. You are also very bravely sharing your experience with others, and by doing so will inevitably influence others, and improve the situation for more people than you can imagine - carers and professionals alike.

    I will be eternally grateful that my own Dad died at home, with the exceptional support of our local hospice's Hospice at Home service and I truly wish that this was available to anyone facing the end of life and that they could choose to end their days where they felt at home, be that in their own home, that of a friend, a community hospital, whatever. I sincerely hope that the focus on end of life care continues to grow, and thank you for your part in it. Much love, George

  7. Just been through this with my mum who had cancer. We were awarded a personal health budget but they quibbled for months about how a live in carer was somehow not what they do. We paid upfront and got the self employed live in carers that were needed so mum could die at home. The irony is that if more self employed carers were recognised by the commissioning groups then more people could get end of life care at home, which would free up beds for others, patients would be happier, and in my case, was cheaper than a nursing home!

  8. Going through this with my Dad at the moment, I told them in June at the MDT that I suspected cancer, but they don't listen. Within 2 weeks he was in critical care and diagnosed with rectal tumour, sent home on pallative care plan yet they are still arguing about it. The hospital sent him to nursing home on PCL and the CHC are asking for Social Workers report knowing he has no social worker because I refuse to deal with someone who did not even have a conversation with my Dad. The problem is the MDT Nurse and SW are best buddies, the nurse turned up and went through dads records the day before the meeting so it was preordained, I have POA yet was not involved and anything I had to offer was rebuked. They act in a disgraceful manner and they cannot in any sense of the word call themselves nurses, a real nurse has compassion these people don't.

  9. This could be our future. More people need be aware of this & of course make our voices heard very loudly.