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