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We weren’t asking for the Ritz

Personalisation and end of life care - my mum's experience

Martin Routledge

Over the past year I've been working on a project for Think Local Act Personal with DH, ADASS, Alzheimer's Society and others looking at how to improve the delivery of personal budgets to older people. I have also recently started co-ordinating a project for TLAP on integrated care and support at the level of the individual via health and social care personal budgets. At Christmas the need to ensure more personalised and integrated support became an even more real issue for me and my family. My mum came to need urgent support due to an eventual diagnosis of late stage cancer. My sister and myself found ourselves in the world that so many occupy - trying our best to support our dying mum and to navigate the health and social care system to make her final weeks the best they could be. We found a lot of dedicated, hard-working health and social care professionals and systems that worked well in some respects but badly in others.

When mum came to be in need of support members of the family rallied round, time was taken off work, support was offered. This was an amazing person who had been surrogate mother to her five brothers and sisters after her own mother died when mum was only 14.  In very tough financial circumstances she had to leave school, which was a big disappointment to her. She supported her siblings and their families through all sorts of difficult times over many decades and people loved and were keen to help her in turn. In this respect mum was lucky - many people don't have local supportive family. I dread to think how things would have turned out if we had not been there supporting and advocating.

This family support has its limits however. People have to work and the level of support needed was high. My sister, living locally was taking on too much of the support. I therefore started the process of requesting a social care assessment. My mum wasn't wealthy - with savings well under the 23k threshold so she would qualify for help. In the interim we looked into getting some short term support at home from a local domiciliary care agency. The two best sources of advice on this turned out to be the United Kingdom Homecare Association and my mum's mobile hairdresser! We found a small local agency that she was very happy with after she interviewed them and made clear her requirements. These included having a team of no more than 3 people, all had to have met her and been vetted by her in advance and they needed to understand and agree key ways of providing support. The arrangements were put in place and started to work well.

Pursuing the assessment, I gained some insight into reasons for low levels of PB take up - at least in one locality.  Having chased the assessment for about a week I managed to speak to a "triage  worker" who was very kind and compassionate but from the discussions it became apparent to me that there were two routes to support. One seemed to be a relatively rapid assessment and if eligibility was established a homecare package put in place. A problem here was that this could only be done via an agency the council had a contract with and the one my mum had started using was not on this list. So she would have to discontinue use of the carers she was happy with and accept another agency allocated by the council. The other route (not mentioned until I asked) was via "the self-directed support team". This seemed to require a different assessment and was very likely, I was informed, to take longer. I think the person giving this advice was kindly trying to help me make a decision in my mum's best interests. Now I am me and of course know a bit about personal budgets but someone without that knowledge (most people) entering this process would probably never have had a real choice at this stage as they wouldn't have known about the options.

Me and my sister were keen that mum should be able to choose her support  and we knew that she wanted to keep the existing small team of home carers. It seemed that I was being asked to make a choice at this pre-assessment stage. We could go with the rapid assessment, likely to lead to allocation of support quickly but from another agency. Alternatively we could choose at this stage to have the assessment from the SDS team but it wasn't clear how long that would take to arrange with strong hints that with the panel process, arranging care would not be rapid. It seems to me that faced with this choice and in sometimes pretty desperate circumstances most people, even if keen on directing their own support, would give up and opt for the rapid, no choice support. We finally got agreement that there would be just one assessment and we would then decide which route to take.

As things turned out however my mum's need for support developed rapidly and she qualified for a fast track continuing health care assessment. A rapid assessment took place and mum was allocated what was described as the highest level package to support a person at home. This turned out to be three hours a day support and three overnights. Some extra night time support was provided by Marie Curie nurses (2 nights a week - they were great). At first the health commissioning arrangements looked like they were going to be as inflexible as the social care ones. A home care agency (not the one my mum was using) phoned up on a Friday morning and said they would be coming around that night and would take over my mum's care. We had to ask them not to come while we approached the district nurse and then the complex care team to ask that they buy in the existing agency to avoid the discontinuity and allow mum to keep some control. This seemed to be an unusual request and took quite a few phone calls and some time to arrange, but eventually was agreed - mum could keep the same team.

For a few weeks we and mum did the things that happen when someone is very ill - tests, appointments, waiting for definite diagnosis, trying to establish if any treatment is possible. Then a heart-breaking series of conversations when it was clear my mum was going to die quite soon but we had to help her decide if she wanted some treatments to possibly make her time a few months rather than a few weeks. I never want to have that conversation with anyone again - but my mum, typically, handled it and was always more concerned about how we were feeling than anything else. She decided against treatment, said that her 76 years was not a bad lifespan and that she had had a wonderful life, full of things to celebrate. She said she was proud of me and my sister and our children. She was sad about some things she would not now see but asked us to have no pity for her.

For a few weeks mum was supported at home by lovely supporters and ourselves. The GP was great visiting very regularly and being very supportive, her pain and sickness was mostly controlled. We had some wonderful, often funny talks (some of these were perhaps a bit drug enhanced - like my mum but a bit high)!

Then things got harder. Mum developed some difficult symptoms that were distressing for her and us. We felt she needed more clinical attention and probably some more hours of support. We explored this in the context of mum having been very clear to us about what she wanted and didn't want. Top of the list of things she wanted to avoid was dying in hospital, with a nursing home a close second. Mum had talked to us about this over the years but when she became ill (and in the context of the memory loss that had been coming on for some time) we had talked to her in detail about her wishes. We had considered going for lasting power of attorney but decided against it in the end as it looked like it would take too long. She was very clear and consistent about what she wanted. Though she didn't use the language of personalisation this was what she was talking about.  No offence to people who might be happy with a nursing home but this was absolutely not my mum's choice. 

With help and advice from a Macmillan nurse and after discussions with mum she agreed that the best next step was to go to the local hospice, to see if the symptoms could be tackled. This was a hard decision. Mum said "it's getting serious now isn't it". We hoped that we would be able to get her home again but leaving the home she loved cut us all up.

At the hospice, the first experience was a bit worrying - a quick assessment suggested that my mum was relatively stable. They felt they may be able to do something for the symptoms but that, to be blunt most people using the hospice were closer to death. It was at this point that a chilling dynamic kicked in. It wasn't felt appropriate for mum to be at the hospice for long, but she needed more care than the "maximum" home based care package. It became clear to me and my sister that what happened to people in this situation was that they were directed to a nursing home for "24 hour care" and that this is where they would probably die. We knew of course that this was my mum's nightmare scenario. All the professionals were kind and caring but they all (with one exception) seemed to think that this was just what happened, that there was no alternative. My feeling is that if mum had not had powerful advocates at this stage, this is what would have almost certainly happened.

Me and my sister explained that this would be condemning someone in the last weeks of their life to something that they really didn't want and as far as we were concerned just wasn't going to happen.  We kept thinking of the Marie Curie slogan that the last moments of a person's life should be as precious as the first. We weren't asking for the Ritz, just for a bit more clinical support and homecare to add to our family support. It looked to us like a de-facto cap was in operation for CHC that seemed to us to mean that the maximum home care package wouldn't cost more than a contracted nursing home place. Some of the involved professionals would ask "what is your mum's problem with a nursing home, some of them are very nice". Our response was "it doesn't really matter what her problem is, she just has one and these are her last weeks. We are sure that nursing homes would be fine for someone who chooses them but our mum isn't"

An empathetic consultant suggested that we bring together the involved professionals with ourselves and try and figure something out that would work - we agreed. It took about 10 days for this to happen during which time mum got great care at the hospice which had a very personalised culture. Her symptoms were better controlled and she even managed to eat some food. Thanks to my friends Helen and Gill we did a "one page profile" for the staff that showed clearly what was important to my mum and how she wanted to be supported. They made sure she got the Daily Mirror and that her tea was at the right temperature, that her hair was clean and tidy and she could put a bet on the races if she wanted.

At the multi- disciplinary team meeting, most of the professionals were still very sceptical that it would be possible to get a package to get mum home - they just hadn't seen that happen before. But they listened and developed an assessment for support to do just that - designed with us. This was submitted to the PCT. I had previously corresponded with them about this issue of a "maximum home package" which didn't seem to fit with my understanding of the DH CHC guidance. The guidance does say that PCTs (now CCGs) can take resources into account but was quite strong about responding to people's choices at end of life. My mum's choices couldn't have been much clearer. The PCT had suggested that perhaps there was some misunderstanding…of course what should happen was that a further assessment should take place and clinical advice heard…So we waited for a response to the new assessment. We made it clear that an unreasonable refusal might well lead to legal action.

Having said that me and my sister had decided we would pay whatever it took ourselves to get mum home if it came to that (of course not an option available to people without the money). Our feeling though was that our mum deserved a few thousand quid for a small period at the end of her life from the NHS that she had paid her taxes to support for decades and had worked for as a pharmacy stores manager for many years. We were worried also however that whatever we spent on home care, the equipment and clinical support for symptom management was needed as well.

As things turned out we didn't manage to get mum home. The response from the PCT, unlike the initial fast track assessment, was slow. Asking almost daily we were told the key officer was on holiday and then had been off sick. About 2 weeks passed - surely there isn't only one person who can make such a decision we suggested? During this period, however, mum's condition deteriorated rapidly and in the end she died quite peacefully in the hospice. Though we were of course expecting this within a short period, it still came as a shock. The staff at the hospice were very supportive to me and my sister at an awful time. We can't thank them enough and plan to make a donation to the hospice and Marie Curie.

There was a big turnout for mum's funeral at the end of March. I was relieved that I managed to hold it together enough to speak. My mum wasn't religious so it felt right that the main words spoken were by her family about her life. I was able to talk about how this woman who often referred to herself as "just ordinary" was really extraordinary. How she was strong and kind and supported us through our lives without it ever feeling like interference. We played Sinatra and Pink and people smiled in celebration of a live well lived. Looking through her home I found a thousand mementos of good times, holidays together, important moments, letters to and from us all.  

Now a month later I am reflecting a lot on end of life care. There was a lot of discussion about Lady Thatcher spending her final weeks at the Ritz. My feeling though is that most people wouldn't want that. Most people probably want to be at home surrounded by the familiar and with people they love. I know not everyone is as lucky as my mum, to have local supportive family and I hate that reality. It strikes me that for my mum to have been at home and well supported, probably until the last few days, would have needed a few things. First is a bit more specialist nursing support. Pressure care, pain and sickness support, continence etc. were issues. It felt like there wasn't enough district nursing capacity available - looking at the latest figures on decline in numbers we saw the effect at the sharp end.

It would have helped to have had a main co-ordinator/liaison amongst the involved professionals and across community and hospital services. It sometimes felt that we were receiving a series of separate interventions and this led to some confusion and delay. For example we arrived at a hospital appointment (increasingly hard for mum to manage) expecting an MRI scan and were told this hadn't been arranged but they repeated an ultrasound that had been done just days earlier.

Sometimes we did not have the information we needed to help decision making.  On pressure care for example my wife, a former district nursing sister, advised we take care to avoid mum's skin breaking down, with prevention being a priority. The suggested response to this was to use a pressure relieving mattress. For a number of reasons this wasn't easily possible but when I asked for alternative possibilities the response was to look on line. In some respects this was fine but I would have thought this was a very typical situation and some more signposting might have been offered.  A better example was the Macmillan nurse at the hospital who kept in excellent touch (including out of hours) and talked to us straight about options.

The other main thing that would have helped  is a few more hours day time domiciliary support and a couple more nights as mum's condition progressed. Mum only lived a few weeks after diagnosis so the overall cost to the NHS would have been modest. The cost of her time in the hospice must have been much higher but of course the hospice is run by a charity and all the costs don't fall to the PCT. 

Lastly though, it would have needed everyone involved to believe that supporting my mum at home because that was her wish was just the right thing to do and should not have been negotiable. That would be personalised end of life care. Surely everyone deserves that?

Note: This blog is written in a personal capacity.

 

13 comments for “We weren’t asking for the Ritz”

  1. Gravatar of Gill PooleGill Poole
    posted 29 April 2013 at 18:35:27

    This has had me sobbing, we lived through a very similar situation with my partner's wonderful mother. All she wanted was to be at home surrounded by her family. I have a nursing background and have been a Head of Community Services for a PCT. I was her main carer and we found many of the same issues you have described. I so agree with your conclusions and would love to fight for people to have the death that they want, where ever they wish it to be.

  2. Gravatar of alicealice
    posted 29 April 2013 at 19:03:02

    My mum was diagnosed very late. Like many older people; pride, habitual self-reliance and fear of the medical profession, meant she suffered for years and refused all the families attempts to get her see someone. She finally collapsed and finally was admitted to hospital .

    She was fortunate in having a large family (as large a one that would make a Daily Mail reader shudder), which meant my oldest sister was able to be with her through all her tests and we were able to attend a ward meeting to make it clear that she needed to be in her own home. We all took compassionate leave, holiday leave and unpaid leave so that there was always a family member to support. I drove 500 miles to support her - the least I could do after all she had done for us. As her condition deteriorated she needed a lot of care and we go great support from Marie Currie once a day. After sleepness nights we allowed the Council to provide an overnight carer - this was terrible. They had no idea what they were doing and she was too "grateful" to say she needed the loo and couldn't lift the massive cup of water they left in front of her. Having worked in social care for over 20 years, I was not surprised.

    As she deteriorated so rapidly, we did not seek extra extra help but cared for her ourselves. At the end. I washed her body and changed her clothes myself - I knew she wouldn't want a fuss but would want to be "respectable". If her condition was such that her need for end-of-life care was for a longer period, I would have fought for a direct payment so that we could employ the right people to care for her.

    My mum's death was painful but dignified. We put pictures all around the hospital bed of the family and by the grandchildren. We talked about everything, from school, the news, to the new supermarket. She died seeing us together and knowing that life went on. We were able to do this, not because it expected of us but because, thanks to her, we are articulate, knowledgeable and determined. My husband's parents both died in hospital. I am sure they would rather have been at home with their own things around them, but this just wasn't considered an option. Getting people home, if they wish, should always be a priority for end-of-life care.

  3. Gravatar of MartinMartin
    posted 29 April 2013 at 19:58:35

    Thank you Gill and Alice for your messages and sharing your own experiences. I find myself feeling terrible for the people who don't have local supportive families and thinking about what I/we might be able to do to support these people better

  4. Gravatar of Jayne KnightJayne Knight
    posted 29 April 2013 at 22:29:53

    I am so sorry to hear of your loss Martin. Sadly what you are saying is repeated time and time again and it is only when people resist and know what to do that terrible things do not happen to people.
    Your Mum would have been very proud of how you coped with things and she had you all around her. Se sounded a lovely lady and you will obviously miss her mightily.
    So you can make a difference with reflections and articles like this that in get memory might make it better for others.
    God bless Martina and family and your Mum.xxJayne

  5. Gravatar of Bridget PenhaleBridget Penhale
    posted 30 April 2013 at 19:45:23

    Thanks so much for sharing this with us Martin and for your thoughts about what personalised care at the end of life should mean. It is important that as many people as possible are able to read this blog and consider your points so thanks for doing this here and elsewhere (via LinkedIn etc).

    I hope that you are finding time for you and family at this sad time. However, I think that your Mum would have been very pleased to see what you have written and what you have achieved/will achieve with your contribution to the discussions in this area. There is still much work to be done but this is an important step on the way.

  6. Gravatar of MartinMartin
    posted 01 May 2013 at 16:35:03

    Thanks Jayne and Bridget. I've sent over a copy of the blog to the NHS End of Life care programme team

  7. Gravatar of Chris Moon-WillemsChris Moon-Willems
    posted 02 May 2013 at 06:35:55

    I too am sorry for your loss Martin. Much of what you said resonated with my father's final journey and several of my clients. Like your mother, my father wanted to die at home. My mother has dementia and was in a care home and their hard earned savings were limited. My father who was registered blind, refused invasive investigations into his deteriorating health, a decision supported by his consultant, but there was therefore no label to access some services. I believe he had blood and bowel cancer and his wonderful GP concurred this was highly likely. Eventually he was fast tracked for CHC so the LA discontinued funding his Personal Assistant, an older man who had become a dear friend to him. My brother, sister and I paid for his visits to continue and he gave loads of his own time for free as well. When Dad's condition deteriorated, I moved in to care for him myself. His last weekend was a horrendous catalogue of cock ups and many things were unavailable or difficult to access because it was a weekend. He should have had 4 visits a day from 2 Carers but sometimes only 1 turned up and once none at all. A hospital bed that would have been kinder on our backs didn't turn up because the DN had ticked the wrong box when she ordered it and the syringe driver to manage his pain when he was unable to swallow easily also failed to turn up. Thankfully his final hours were spent listening to his favourite music and I was with him. The problems seemed to be lack of co-ordination, lip service to personalisation (like you I knew what to ask for but a lot of people don't) overstretched services at weekends and a lack of access to his own GP and helplines for me over a weekend. End of life care is so very important and one of the most important things to be personalised.

  8. Gravatar of adrienneadrienne
    posted 09 May 2013 at 18:56:42

    Sorry to hear of your loss but thank you for sharing your story. This is what personalisation is really about. Ask most people where they want to die and they will say at home so why do people in care services think it should be different? Keep up the good work.

  9. Gravatar of David RoulstonDavid Roulston
    posted 14 May 2013 at 08:52:50

    Martin - just read your blog and it resonated so strongly with my own experience. My mum died in hospital following complications associated with her diabetes. The care in hospital was generally of a very high standard but what struck me was the general lack of knowledge about care options. I have worked in social care for some 30 years and understood the system but even for me it was extremely difficult to advocate for alternatives to the route followed. The main thing I picked up from the experience is that we need to have far more education and publicity about what personalisation means in practice. Part of this needs to be practical information and education laying out how families can be helped (rather than generally hindered) by the professions and organisational systems to make a personal care package a reality. Thank you for your blog.

  10. Gravatar of Jeanne CarlinJeanne Carlin
    posted 14 May 2013 at 19:57:32

    Martin - I am new to Twitter so have just found this blog and was moved to tears reading it. I felt if you could not working through the maze that is called a system - what hope is there for people less knowledgeable.
    There was great resonance for me - I recently attended the multi professional meeting to assess whether my father meets continuing health care funding criteria. I have worked as a social worker in children's disability services for 20 years and have cared for my disabled daguther for 30 years - yet I was totally thrown by the 'new obstacles' that were erected during the meeting - that I have never heard about. They seem to have created rules that require us to jump through more hoops. For instance I was told that social services would not consider residential care for my father until he had at least 4 support visits a day in his own home. I was too stunned to even question where this came from.
    Your account of working your way through assessments and service provision to ensure your mum lived her final days with dignity in a way that she wanted - rung so many bells for me. Thanks for sharing your account.

  11. Gravatar of Martin RoutledgeMartin Routledge
    posted 15 May 2013 at 07:43:22

    Thanks Chris, Adrienne, David and Jeanne for your comments and sharing your own experiences. I'm thinking hard and talking with people about what practical action for improvement might be taken locally and nationally - more ideas welcome

  12. Gravatar of Gill Phillips - WhoseShoes?Gill Phillips - WhoseShoes?
    posted 21 June 2013 at 12:31:43

    Hi Martin Just re-visiting your wonderful blog in the context of a Twitter conversation today with my friend Suzy Webster (@suzysopenheart). Suzy has such common sense suggestions about how she and her family can be helped to support her Mum living with dementia. All she is met with is rigid "services" that do not meet their needs and are probably far more expensive.
    I hadn't realised I had not actually commented on your blog - just privately - so apologies for this omission. These stories are so important to share. Thank you for raising awareness in this powerful way and I hope it does indeed lead to appropriate action locally and nationally. I hope you and your family have very happy memories of your wonderful Mum - she would indeed be proud of you all. Gill x

  13. Gravatar of martin routledgemartin routledge
    posted 20 July 2013 at 11:00:21

    In the few months since I wrote this blog I have had literally dozens of conversations and exchanges about personalisation and end of life. One nice thing that happened is that I got a message from the self-directed support lead for the town my mum lived - the email told me that my mum's experience had touched people locally and one consequence had been the development of a fast track PB process for people at end of life that is now in place. This encouraged me and confirmed that people really want to make positive changes

    I have a sense that there is such common experience that perhaps a groundswell might be building for us to be able to move forward on quite a few fronts. Over the summer I am going to be thinking about this more - please get in touch if you have thoughts about possibilities.

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Last Updated : 29 April 2013. Page Author: Donna Godding.