A holistic approach to my daughter’s medical care

I am writing this blog to talk about the enormous difference it makes to my daughter and us as carers when a consultant takes a holistic approach to my daughter’s medical care. A few months ago Erica was referred to a Palliative Care Consultant (to maintain anonymity I will call her Dr L). Dr L works in the community, rather than being hospital based and she sees us at home. She has a background as a GP and has worked in palliative care settings. She has provided us with an approach which is holistic, responsive and co-ordinated.

So as this is a blog – I will start at the beginning for those of you who do not know me or Erica personally or virtually.  My daughter, Erica is 33 years old and she has profound and multiple impairments and complex health needs.  She lives at home and her support is funded from Continuing Health Care through a Personal Health Budget.  My daughter’s health has deteriorated and been problematic over the past 15 years and as she cannot communicate verbally we have to guess at the problems and try out various solutions until we find the answer.  Nearly two and a half years ago she had a gastrostomy fitted and a Nissen’s fundiplication (valve at the opening of her stomach to stop reflux). The gastrostomy tube is used to give her medication and fluids – she is still fed orally.  When the operation was carried out they found that her stomach had gone through her diaphragm and was in her chest area. So her stomach was brought back down and anchored in place so that the gastrostomy could be fitted.

Since the operation she has indicated that she is in pain when she eats and although various options (such as, dilating the fundiplication) have been tried we have not yet found the solution.  So Erica lives with the pain and we live with the emotional stress of hearing her shouting and being unable to stop the pain. Erica, like so many people with learning disabilities has developed more complex health issues as she has ‘aged’ and I would describe her as being in the final phase of her life – she does not  have a ‘condition’ which will end her life so we live with the uncertainty of not knowing how long this phase will be. Her health has always made her vulnerable to having a shortened life expectancy but as her health needs become more complex so, we feel her vulnerability increases.

Erica is seen by a number of different consultants for her health problems – consultants specialising in gastro and bowel problems (Erica has an ACE so her bowel is irrigated daily), a neurologist (Erica has uncontrolled epilepsy) and she is also seen regularly by a Dietician as her weight is very low. Her care is co-ordinated in a holistic way by her GP and Community Nurse for Learning Disabilities. We have and continue to receive an excellent service from all of these professionals – so what has Dr L been able to add that has made such a difference.

One of the first tasks that Dr L did was to go through all Erica’s medication and supplements (there were about 14 different ones at the time) and eliminate those that could be exacerbating the problem. Erica’s medication had been added to and prescribed by a number of different specialists and by taking a holistic view we were able to eliminate or change some of these. This resulted in us being able to deal with Erica’s impacted bowel successfully – although the outcome was temporary.  Dr L then tested out a number of possible hypotheses in terms of what may be causing the pain – tried a spray for ‘intestinal angina’, she was tested for Coeliac disease, tried a muscle relaxant for IBS, arranged via the GP scans and x-rays to monitor the state of her abdomen and the siting of various organs  etc.

The advantage of working with a community based doctor is that we were able to contact her easily, she could stop and start different medications quickly in response to Erica’s reaction and she could do the co-ordination with our GP practice and some of the consultants already involved with Erica. You may argue that the GP should be doing all these things – that is just not possible within the current system and with the best will in the world on the part of our excellent GP’s it would not happen.  Firstly, GP’s do not have the specialist knowledge nor do they have the time to probe and question us about Erica’s responses to build up that picture based on her non-verbal communication.  None of the appointments with Dr L have been under an hour in terms of time. The visits take place at home and Erica’s community nurse is part of the discussion. She is the person who provides day-to-day support and care, knows Erica well and sees her health as part of the whole person. The hospital consultants have the specialist knowledge but each deal with a different aspect of Erica and based on their setting and the way they work have not been able to offer the level of responsiveness that has been needed.

So what is the outcome – Erica is still indicating that she is in pain when she eats. But we have now eliminated a large number of possible causes. In the next few weeks we will be attempting to ‘pump feed’ Erica testing the idea that her abdominal area is very small, made smaller by her scoliosis so every time she eats her stomach expands and causes pain.  This type of responsive approach has been made possible by having the involvement of Dr L.  We have achieved more in the past 6 months than we achieved in the two years prior to that.

I would like to end this blog by making some comments about the way the learning disability service operates.  Our learning disability service, like many others around the country, employ psychiatrists with a specialist knowledge of learning disabilities, autism and mental health and the specialism offered by Psychiatry is definitely needed.  However as the learning disability population is living longer and developing more complex health issues there is just as important a need for doctors with more of a ‘medical base’ and palliative care experience to be part of the learning disability service.

People with profound and multiple disabilities are now living into adulthood in more significant numbers. According to the official report, Raising our Sights (2010) in a city with a population of 250,000 people there will be 78 people with PMLD (estimate in 2009) increasing by 1.8% each year.[1] So although a relatively small population they are high users of health services and are likely to be 100% funded by Continuing Health Care in terms of their support. Based on current mortality rates (ie. a shorter life expectancy) and the development of health difficulties at a younger age (Perez et al. 2014) [2] they are likely to have palliative care needs from their 20’s or 30’s.

I am not advocating that there is a lesser need for Psychiatrists in the learning disability service, however there is an equal need for this service to employ more ‘medically-based consultants’ to responded to a growing population of adults with profound and multiple disabilities who have complex health needs.  I would see a consultant with a background in palliative care and general medicine working alongside the psychiatrists in learning disability services to provide a holistic approach to the needs of a population who are currently not being served by the psychiatrists but who have health needs which require specialist knowledge. This will be the only way we can provide a service which is cost-effective, responsive and person-centred service and will allow some of the most severely disabled adults in our population to live their final years without the pain and distress we have seen in our daughter over the past two years and hopefully will give them a dignified death when that time comes.

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[1] Department of Health. 2010. Raising our Sights: services for adults with profound intellectual and multiple disabilities. Report was written by Professor Jim Mansell.

[2] Perez, C.M, Ball, S.L., Wagner, A.P., Clare, I.C.H., Holland, A.J. and Redley, M. 2014. The incidence of healthcare use, ill health and mortality in adults with intellectual disabilities and mealtime support needs. Journal of Intellectual Disability Research.

Emotional cost of the cuts

Over the past few weeks I have kept intending to write a more personal perspective of what the current ‘cuts’ to services  do to families on an emotional level.  Having read the Guardian article (http://www.theguardian.com/politics/2015/dec/06/council-tax-offset-care-cuts-widen-gap-rich-and-poor-kings-fund) and taken part in a Twitter conversation (@MarkNeary1, @GeorgeJulian) I decided to put my situation out in the open and talk about what the current cuts are doing to me as a carer.

For those of you who do not know me personally or virtually I am a carer for two people. I have cared for my daughter, Erica for 33 years.  She has profound and multiple impairments and complex health needs – she lives at home and her support is funded from Continuing Health Care. My daughter’s health has deteriorated and been problematic over the past few years and as she cannot communicate verbally we have to guess at the problems and try out various solutions until we find the answer. She has indicated that she is in pain when she eats – for the past 2 years and although we have tried various options we have not yet found the solution.  So Erica lives with the pain and we live with the emotional stress of hearing her shouting and being unable to stop the pain. . I also support my mother who lives in a nearby town in residential care. She has chronic respiratory failure and in the last few months has developed a heart condition and kidney problems. Both Erica and my mother would be described as being in the final phase of their lives – neither of them have a ‘condition’ which will end their lives so we live with the uncertainty of not knowing how long this phase will be.

Over the years I have found ways of living with the levels of stress and emotional strain that being a carer for these two people involves.  For those of you who know me you will know that I am a positive person who will use humour to deflect difficult situations. I have found ways to build in ‘me’ days which keep me sane and I am active as a carer both locally and nationally as that helps make sense of my experience. But over the past few months I have hit rock bottom and needed to refer myself for therapy (at a cost to the health service) as the last straw broke me emotionally (excuse the mixed metaphor).

What I did not need - was to discover that one of Erica’s services would be closing due to the cuts in local authority funding.  Erica receives a home care service – someone comes to get her up in the morning and someone puts her to bed at night – the team – Community Support Team (CST) – is a local authority in-house team.  The reason we use a homecare service rather than employ our own PA’s for these calls is because they are relatively short calls (an hour in the morning and half-an hour in the evening) and we struggle to recruit PA’s to do such short calls. The small team of people who carry out this work are trained in giving meds via a tube, trained in moving and handling, understand her non-verbal communication and most of all have over time built up a close relationship with her and with us. Initially we worked hard to get a good, safe and consistent service – which we have now had for a number of years.

So what happened?  For the past few years I, like so many other carers and disabled people around the country started hearing my city council talk about ‘delivering adult social care differently’ .  It sounded like another slogan – perhaps I should have taken it more seriously but as a carer I have learnt to block out things that I don’t think I need to worry about – yet. I attended a consultation event in the early stages where not much was agreed and we were told that there would be further consultation. I came away thinking – some local authority services will close – but as CST was the only in-house service we use – and I consider it as an excellent quality service I did not believe, once we were consulted it would be closed. So I put it on the back-boiler in my mind.

Then over the Summer this year we received a number of letters saying that adult social care will be delivered differently and ‘someone’ would be coming to consult us.  By September when no-one had turned up I emailed senior people in the City Council and started making a noise at the Learning Disability Partnership Board. Very soon after that we received a letter stating that the City Council was selecting 12 providers to provide all services for adults across the city, on a framework (introduced to a new jargon term in the world of commissioning). I still naively thought CST would survive – but started asking the workers who came to do Erica’s calls if they knew if CST had applied to be on the ‘framework’.   It was at this point I started to worry and eventually one of the workers told me that they had all been called to a meeting and told the service was closing – in just over a month’s time.

I then went in to a total tail-spin – emailed everyone I knew and emotionally it was the last straw and I became very depressed. Why – with hind-sight I should have guessed that this would happen – central government policy is very much about local authorities becoming commissioners of services rather than providers of services. Services have been cut, regardless of whether they are good, bad or indifferent – they are cut because that is government rhetoric and it is the only way the local authorities can survive financially. I naively held on to the belief that if a service is ‘good’ it will survive and when it did not I felt I had let my daughter down in not protecting her and doing something sooner – rationally not sure I could have done anything – but rationality does not come into it.

I have now spent the last couple of months meeting managers, reading impact assessments and service specifications responding to inaccuracies in the way information is presented and generally fighting Erica’s corner. This is time consuming and emotionally draining. I often wonder if politicians or professionals working in services think about the emotional cost of their policies? It is so easy to rationalise why these things need to be done in the ‘name of progress and change’.  I read an article in our local paper based on an interview with the deputy council leader explaining that the Council had to reduce services in order to save £7m – at no point did he talk about the emotional cost to staff or people who use their services and their families.

I guess I don’t blame the local authority for the cuts – I know both the director of adult social care and the lead member for social care (@tigerbonham @hel1958) and neither of them would chose to do what the City Council is having to do. However, I think the way the cuts have been implemented locally leaves a lot to be desired.  My focus now is, having accepted this service is closing, to slow down the process and ensure that the transition takes place in the best possible way for my daughter.

I have written this post from my perspective as a carer – because of the emotional toll that the cuts have had on my life and well-being.  I cannot begin to know what impact the service closure will have on my daughter and I need to accept that she has no way of telling me that directly. She has got to know and trust a small team of people who she sees most days of the week. Changing to a new service will be for her as big a change as she went through when she moved from children to adult services.  She will lose so much experience, skill and care – so as a parent I need to respond by asking David Cameron – is balancing your budget worth more than ensuring that vulnerable people can be supported to live lives with a sense of dignity and well being?

How do families unravel the mysteries of DOLS (Depravation of Liberty Safeguards)

As a parent carer of my 32 year old daughter, Erica I have just spent two week trying to understand DOLS  and whether or not this applies to her. Erica has profound and multiple impairments plus complex health needs.  In practical terms this means that Erica cannot walk around on her own, she does not use language or any other conventional system of communication. She requires assistance with all her routine tasks (washing, dressing etc) plus she has various clinical procedures which are part of her daily routine and keep her alive. She lives at home, but goes into a residential setting for her ‘respite’. Her services are 100% funded by continuing health care.

So why have I started on this quest for knowledge? A few months ago I mentioned to a health professional that I seemed to be having problems whenever I tried to contact Erica’s Care Co-ordinator – I was told this was because he was busy doing assessments for Dols. I then started hearing via the grapevine that local authority staff we spending 2 days a week carrying out assessments for Dols and that all adults who had one-to-one supervision would be assessed for a Dols. Many people said ‘that will include Erica’.  I thought that must be wrong as I thought Dols were for people with challenging behaviour who were restricted in some way by another person or organisation.

I then met another family with a son who has very similar impairments to Erica – the main difference being that he lives half the week in a nursing home and half the week at home. He has been assessed for a Dols.  I was now into the world of reality rather than rumour - so I decided to fill the gaps in my knowledge.  I started with the SCIE factsheet – that states Dols only apply if a person is in a hospital or care home.  But because I remained concerned that I was being told that my daughter would be assessed I continued my quest for understanding.

I contacted Steve an ex-colleague who is a barrister practicing in the disability field (@SteveBroach) and he sent me the legal information that I was missing.  One of the most helpful pieces of information being a blog by Lucy Series:

 (http://thesmallplaces.wordpress.com/2014/03/20/the-acid-test/)

Lucy Series writes about the ‘acid test’ which is simply ‘is the person subject to continuous supervision and control, and are they free to leave?’ If this is the case then that person is deprived of their liberty. This set me thinking – what is supervision?  My daughter has one to one staff for all her waking time (apart from when she is in respite) – but is that supervision or is their role to enable her to access the world around her and carry out the health tasks that keep her alive. In other words, my daughter’s staff enable her to have greater freedom rather than restrict her ‘liberty’ – so I came down on the side of ‘enabler’ rather than ‘supervisor’ – perhaps I am being naive. 

However, I am still left with the issue – that whilst we are not stopping my daughter leaving home or anywhere else for that matter – she cannot leave.  She cannot leave because her impairments are such that she is not ‘able’ to leave. Thus she is deprived of her liberty by her ‘impairments’ rather than a person or agency.

Erica lives at home and from my reading of the court rulings and the law this will mean that however the local authority define ‘supervision’ she will not be assessed for a Dols. The only fly in the ointment is that she has regular respite in a residential setting, although she does not have one-to-one supervision whilst there – does this mean she will be assessed, although I am sure she will be at the bottom of the priority list.

Whenever I discuss the issue with my husband his question is always – does it matter? If Erica is assessed for a Dols will that impact on her life in any way?  I don’t know the answer to that question. I cannot find information written for families on the impact that a Dols will have on the life of the disabled person and on their family. If there is guidance for families hopefully someone will let me know – otherwise definitely ‘a gap in the market’.

Having journeyed down this route of knowledge I am left thinking – how have we managed to create a response which the system (both local authorities and courts) now does not seem to have the capacity to deal with.  I read the statistics on the increase in the number of Dols applications in this last year.  Whilst I don’t want to minimise the need to protect the right to liberty for vulnerable people – my local authority (and I am sure they are not the only ones) seem to be creaking under the sudden expansion of workload – and other aspects of their role are being neglected – thus leaving other vulnerable people more vulnerable.  Was there not a more sensible and reasonable approach to responding to the need to protect ‘liberty’?  Have other local authorities taken a more measured approach or found money to draft in more staff? Once again I write as a parent carer – my expertise is as a carer and not as a lawyer.

Comments or contact via Twitter would be welcomed.

Dental care no longer free

We have recently discovered that dental care, sight tests and prescription are no longer automatically free for those people with the most severe impairments – under the new benefit system. My daughter, Erica who has multiple impairments, complex health needs and is now 100% funded by Continuing Health Care funding – is no longer automatically entitled to free dental care.  Erica, like so many others has been moved from Income Support to Employment Support Allowance (ESA).

A few months ago we received a letter from the NHS dental services in Darlington stating that she had been to the dentist in December 2013 and her dental care had to be paid by her.  We provided them with information about her benefits and then a few weeks ago received a letter stating that she was not eligible for free dental care and if she did not pay £18 she would be taken to court.

I found this information so unbelievable that I then phoned to discover the following. There are 2 types of ESA – one is ‘income-related’ and the other is ‘contribution-related’. Only those people on income-related ESA now automatically receive free dental care, free eye tests, free prescriptions etc. As Erica is one of the most severely disabled people in our community I cannot understand this type of ruling.  Following an hour on the phone to various people in the Job Centre Plus service we were then told that we could complete an HC1 form and apply for free care. 

The 18 page form arrived, I completed that and we now have a certificate (HC2) which entitles Erica to free care for one year.  A new form needs to be completed one month before the expiry date each year to continue this entitlement. Just in case – as a carer I do not have sufficient to remember to do – I now need to remember each year to apply for what was once an automatic entitlement.

I like so many other family carers take Erica to the dentist and without thinking tick the box stating that she receives ESA. Erica was picked up on a spot check – and I wonder how many other carers have made the same assumption that I made.  Erica was entitled automatically to free dental care when she received Income Support, so a change in benefit should not remove this entitlement.  However it does. I wondered whether there are other carers out there who have had to untangle this change.