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.
[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.