Motor Neurone disease – One familys’ story

Recently Carer Watch received an invite from Helen Findlay to the Sir William Beveridge event  “Funding Social Care – Getting it Right for the Next Generation” . Afterwards we exchanged emails and as a result Helen shared some of her familys’ story.

 I am a member of the Service User Advisory Group at the National Council for Palliative Care which I have been involved with for about two and a half years. It’s a voluntary role and I attend meetings and seminars that they organise; I have also spoken at a number of
their events and other conferences aimed at health care professionals
including those working in primary care.

The catalyst for me pursuing this line of activity is primarily because of
what happened to my father after he was diagnosed with motor neurone disease (MND) which happened in the autumn of 2005. From diagnosis to when he died was just seven weeks – the most dreadful seven weeks for him, me, my siblings and my mother. The disease was bad enough – watching him wither away so quickly and all of us trying desperately to help and support him in the face of very bad attitudes and practices from health and social care professionals made it even worse.

My father had been caring for my mother at home up to this point – she had been diagnosed with dementia following a stroke eight years earlier. My father didn’t receive any palliative care nor was any equipment provided for him to help his breathing or ease the considerable pain he must have been in. I know a great deal more about MND now than I did then, although I read a great deal on the internet about it when he was diagnosed. I’ve heard experts talk about it since and just wish I had known more then and also what palliative care we could have fought for – and I mean fought for as we had to fight for everything else.

No account was taken of my dad’s living circumstances or the considerable change that his illness would have on my mother and her life. She couldn’t comprehend just how ill my dad was and was still asking for him a year after his death – she went to his funeral and we had explained to her a number of times what had happened and why but her short term memory problems meant she would keep forgetting.

My dad died in hospital after being admitted for a peg feed. He died in
there even though we didn’t want that. A shining light did come into our lives four days before he passed away in the form of a palliative care nurse from the local Macmillan Hospice. We had sought her out, the hospital didn’t. She was able to talk with the nursing staff and doctors about his condition and how to care for him; she talked with us the family about how we were coping and our circumstances – the first time anyone had done this. She made arrangements for a palliative care consultant to come and assess my dad for admitting into the hospice. Unfortunately, the day the palliative consultant came to see my dad was the day he died.

I am just so very grateful that I was able to be with him when he passed away along with my siblings and other family members. My mum had visited him earlier in the day. As I sat there holding his hand I silently vowed to him that how he had been treated would not be allowed to stand. As long as there was breath in my body I would fight to make the experience of dying, particularly for people with MND and particularly in hospital, so much better than it had been for him.

My dad had been a pilot in the RAF during the Second World War – he flew Lancasters. He was prepared to put his life on the line in defence of our country and our democracy in its hour of need when in his early 20s. His generation are the people that William Beveridge had in mind when he wrote his 1942 report that led on to the NHS and the welfare state. I’m just so disappointed that when my dad desperately needed that welfare state to help him in his hour of need it fell wanting.

After my dad died, we needed to look after my mother. But we also resolved, as a family, to do something about what had happened in order to provoke change particularly at the hospital where my dad died. We wrote a report – The Findlay Report, so named in honour of my dad – that includes a day-by-day diary of what happened plus problems we encountered and recommendations of what we thought should have happened and have been sending it out to health and social care professionals; academics; civil servants; politicians including the PM and government ministers et al over the last three and a half years. We’ve had meetings with some of them too.
We are having an effect and one of my father’s consultants has used it as a catalyst to provoke change to the extent that a new MND unit has just been opened at the hospital with him at the head of it. There’s a lot more to be done and we’re still on the case and will be for as long as it takes.

Our experiences in looking after my mother after my dad had gone has added to my desire to improve the experience of palliative and end of life care in all settings. We had to take the decision eventually for my mother to live and be cared for in a nursing home. She had other health challenges as well as the dementia. From what I observed in the nursing home during the hours that I would sit with my mum, even though it was classified as being a ‘good’ home, it was obvious that there’s a lot of work needed to improve their approach to it. It surprises me, it really does, that nursing homes and care homes are so bad at palliative and end of life care. It’s not on.

My mum passed away almost exactly two years ago – not from the dementia, she beat that. I had left full time employment in order to spend more time with her (it wa a 300 mile round trip to Derby) and I threw myself more into voluntary work around MND, dementia and palliative and end of life care.
Taking on a role with the Beveridge Foundation is a result of this
activity. I have also just embarked on a PhD covering service user
involvement in palliative and end of life care.

I am absolutely committed to improving how we treat people in our society whether it’s social care, palliative care, end of life care et al. What happened to my father was a life-changing experience and a wake up call for me. I will not rest in my efforts to make it better and, as it happens,neither will my family.We’re all heavily involved in such activities (by ‘we’ I mean my elder sister, Margot; two elder brothers, Andy and Stuart and my sister-in-law, Moira plus other family members).  Any brick walls along the way?
Bring them on – I’ll go through them, round them, over them or tunnel under them.

‘Never, never, never give up’ is my motto.

Best wishes

Part 2

Dear Rosemary,

I’m okay about other people seeing emails I write about what happened with my mum and dad and what me and my family have been doing over the last few years.

It is amazing what families will do for each other in times of strife and stress. When it’s your mum and dad there’s no contest with anything else in life. I always think I should have done more and should have realised earlier that my dad wasn’t doing too well even if we didn’t know he was developing a terminal illness. My siblings are the same. He was very independent-minded and terribly proud and wouldn’t admit anything was wrong. You can beat yourself up too much if you’re not careful.

I spoke at an NHS South Central Conference on end of life care near Oxford last week to an audience of health and social care professionals from across the board including personnel from A&E; paramedics; palliative care nurses; GPs; consultants; people from PCTs; people working in care homes; community matrons et al. There were 340 of them! That’s the biggest audience I’ve spoken to. I talked about what happened with my dad and my mum – at least if anyone in the audience wasn’t really aware of what motor neurone disease does, they have an idea now and if they come across someone in their working lives who has it they will hopefully remember some of the things I mentioned and have a better idea of how to handle and care for them.

I also talked about our family campaign and the big news that we’ve had just recently – a motor neurone disease unit has recently been opened in the hospital where my dad spent his last days. The consultant who we have been working with over the last four years used our Findlay Report as a catalyst to get things moving on this. He wrote to us a couple of weeks ago and said that much good had come from our campaign. We’re determined that this success will be sustained and developed and not fall victim to cuts. We’re still on the tail of the local PCT and a local MP is also helping to give us some leverage. I’m being asked if I’ll speak at more events now.

Our Findlay report is on the National Council for Palliative Care website…

But here was my tall, strong, always well-groomed beloved father
transforming before my eyes day-by-day into this gaunt and hunched over,
matchstick-like figure with his spine protruding through the back of his shirt
and skin sagging off him.

Findlay Report

All the best!

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8 Responses to “Motor Neurone disease – One familys’ story”

  1. Alan Wheatley, Green Party of England & Wales Spokesperson on Disability and Social Care Says:

    Thank you, Rosemary and Helen for allowing me access to this.

    In my own life as Green Party of England & Wales Disability Spokesperson on Disability and Social Care and now successful Employment and Support Allowance claimant, I regard engaging in political and party-political activity as forms of self-help and healthy channels for rage.

    I have sometimes been told that in my spokesperson role[s] and elsewhere in life I have been “too subjective.” Yet I have also been told that in such openness on my part I have “allowed the audience to see their own vulnerability and courage, resulting in a rapport rare among performers.” [That was from a performing poet and aspiring singer of humorous songs role, where I was warm-up act for Julie Felix and Marianne Segal and friends in a Hampstead Folk Music Club.]

    Next week I shall be away from home, visiting my mum who has dementia and has now moved into a nursing home. My older sister had been Mum’s main carer since about 2004, when Mum had just reached 80. The cue for Mum going into residential care has been that Mum’s blood pressure has got so low that she is standing one moment and on the floor the next. That has obvious implications for toileting, etc. The dementia is something else, and there is a family history of this kind of dementia associated with strokes and TAAs [Temporary Aortic Aneurisms]. Mum and my older sister have been fortunate in terms of income and living space compared to many people, and my older sister’s husband owns the home my mum has moved into in the West Midlands region.

    Mum is still alive, but her short-term memory has been such that when I was a paid social care worker in Islington London in 2005-2006, or an Information Communication Technology skills tutor from 2006, I frequently needed to answer the same, “What are you doing now workwise?” question whenever I saw her. So it has been somewhat frustrating after so many years of being identified as ‘unemployed’ that she has not been able to share in my career successes. “But there’s no money in it,” is a tag very linked with caring roles in our society.

    But as mentioned above, I am also now an Employment and Support Allowance claimant. I have also been a working-life long volunteer, most recently in teaching basic computing skills in what I describe as an ‘adult nursery’ setting in a local community centre. In such roles, I have greater freedom as a volunteer than I would as a paid worker in charge of a Learning & Skills Council-funded course where funding is largely geared to the number of people who pass an exam. Previously told I was too slow to benefit from any further govt-funded education and training, in such roles I have been told that I have ‘endless patience for slower learners’.

    In my Jobseekers Allowance claimant days, I had difficulties identifying myself as a ‘service user’ because a weekly allowance less than the basic state pension never seemed like a ‘service’ and there was so much ‘conditionality’ attached. But Carers Allowance is even less while unpaid family-based carers save the NHS £87bn a year.

    This is a General Election period now, and also a council election period. I have helped raise awareness of Green Party members and candidates to social care and welfare reform issues in my tenure as Spokesperson on Disability and Social Care. Candidates’ responsiveness to, say the CarerWatch pledges, have been rooted more in Green Party core principles than actual policy.

    Much of my time as Green Party Spokesperson on Disability since 2007 has been engaged in responding to the increasing colonisation and commoditisation of disabled people under the privatisation of the welfare state. I have placed sadly little emphasis on how to implement the UN Convention on the Rights of Persons with Disabilities that the UK govt signed up to in March 2007 that was greeted with apparent media indifference.

    I agree with Carer Watch’s emphasis on the pivotal nature of kinship-based carers in developing an adult care strategy. Yet as a single and independent-minded person resident in London since 1979, it has not been possible for me to take such a pivotal role as my older sister in caring for my mum.

    Caring can take many forms though, and while I plan to take more of a backseat in Green Party disability and social care policy development after May 2010, I am keen to continue supporting the work of Carer Watch and other organisations.

    With: a Community Care news report that the fears that the Personal Care Act 2010 may lay inert on the statute books after the General Election whichever party wins the election; the Welfare Reform Act 2009 continuing to bite; and Vince Cable’s support for ending ring-fencing of funds such as Carers Strategy care breaks money, I wish the govt would ease up on giving carers so much work to do.

    See also the Community Care blog item, “Will I ever be a service user?”.

  2. Tweets that mention Motor Neurone disease – One familys’ story « Carer Watch's Blog -- Says:

    […] This post was mentioned on Twitter by Cath, Cath. Cath said: Motor Neurone disease – One familys' story : […]

  3. Helen Says:

    Update ….

    There are differences between neurodegenerative and neuromuscular diseases that aren’t always appreciated and the fact that once a diagnosis of MND is made then the individual is going to die from it without adequate treatment or effective medicine currently being available. They are left to get on with it.

    My belief also is that once a diagnosis of MND is given then palliative care should be a major concern and plans put in place immediately along with the appointment of a ‘conductor’ as I call it – like a conductor of an orchestra – who will oversee and co-ordinate that person’s care across health and social care services. As is recommended in our Findlay Report. My contention is that if you get it right for MND then you get it right for a lot of other conditions. COPD is another very serious condition that isn’t always appreciated as such by health professionals never mind anyone else.

    I was speaking to a healthcare conference in Slough, Berkshire this week about our Findlay Report and what we’ve been doing that included a large number of GPs and nurses. I had some positive responses from people who spoke to me afterwards during the tea break, including one nurse who said she felt ashamed of the treatment my father had received in hospital. Also from GPs who said they are desperate to change how things work in and with hospitals but feel powerless to do very much.

    Onwards and upwards!

  4. Frankie Woods Says:

    Dear Helen

    I read your article in the recent MNDA newsletter with great interest. My husband died in January having been diagnosed with MND 3 years previously. Like you, my experience of NHS inadequacies was very frustrating and left me with a desire to attempt in some way to improve things. I felt that there was a particular need for practical information combined with access to breathing space for whole families as soon after diagnosis as possible so that those involved, particularly the primary carer, could plan and prepare. I am lucky enough to live in a large house in a beautiful part of Somerset and, with the assistance of the MND Association, my home was made available to families living with MND. While I was abroad for 3 months 13 families, of up to 9 members at a time, stayed for a week each and in peaceful surroundings were able to try out a variety of enabling equipment in a home setting while having space and time to enjoy each others company on neutral ground. This was hugely successful and I am keen to develop the idea further but feel that to target the families most in need and to provide them with the best practical advice I should be working with those closest to the diagnostic process. It occurred to me that your father’s consultant and the clinic that he has set up would be a good starting point. I would be grateful if you would please either pass on this message to the consultant or send me a contact number. I would also be very interested to read your report. Well done to you and your family for seeing it through and achieving so much out of considerable heartache. I look forward to hearing from you soon.

    Sincerely, Frankie Woods.

    • Frankie Woods Says:

      It is over a month since I posted the above and as yet have not received a response. I would appreciate it if somebody on the Council would please forward the above to Helen so that we can make contact. With thanks,

      Frankie Woods.

  5. carerwatch Says:

    Hi Frankie,

    Your original comment was forwarded. I will see if we can contact Helen again.

    Thank you

  6. Motor Neurone Disease – Findlay story updated « Carer Watch's Blog Says:

    […] update to this article  regarding the Findlay family and their quest to improve the palliative care system for other […]

  7. Motor Neurone disease – End of Life, One familys’ story (Update) | Carer Watch's Blog Says:

    […] is an update from Helen Findlay, who first shared her familys’ story with us in […]

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