A delayed Happy New Year - things have been very busy the last few months so we're pleased to be able to send out an April newsletter, particularly as we have some very exciting news.
Working with the 'Coma and Disorders of Consciousness' Research Centre
Empowerment Matters are delighted to share that from April, Jakki will be seconded to Cardiff University part time for 6 months to help with research on advocacy & best interests decisions for those in a permanent vegetative or minimally conscious state (also known as Prolonged Disorders of Consciousness).
Jakki will be be working with the 'Coma and Disorders of Consciousness; Research Centre http://cdoc.org.uk
We first encountered the work of CDOC when team members came for training in understanding non instructed advocacy and wanted to learn more about how the Mental Capacity Act 2005 could be delivered on in practice.
Since then research by CDoC has had a huge impact on the field - especially for ‘coma’ patients and their families - and we have often worked in parallel with colleagues at the research centre in producing evidence for official enquiries and impacting on guidelines and policy. We are delighted by this opportunity to now take forward the impact of CDoC’s research throughout this secondment.
At the request of care providers and/or families Jakki will, where necessary, (a) provide support for best interests consultation processes about the VS/MCS patient in line with Royal College of Physicians guidelines on the treatment of PDoC patients and (b) if a consensus decision is (or has been) made that it would be in the patient’s best interests to withdraw artificial nutrition and hydration then she will work with families and professionals to facilitate the timely collation of information necessary for the completion of an application to court.
Jakki will take the lead in producing a report
- detailing her activities and the outcome
- reviewing how institutions/professionals have embedded learning into their future practice
- summarising her own intervention as advocate and implications for policy
- reflecting on the role of Independent Mental Capacity Advocates (IMCAs) e.g. where current legislation says such advocates are not available if there are family members ‘appropriate to consult’.
The research at CDoC has shown that
- Patients in permanent vegetative and minimally conscious states are ‘lost’ in the system – there is no register of such patients, they are dispersed into long term care homes with little specialist expertise about the diagnosis/prognosis/law.
- Patients are hidden by a ‘wall of inertia’ – with no one sure who is/should be taking decisions or even a (false) sense that no decision needs to be made (unless something changes, such as a feeding tube becoming dislodged).
- Families feel abandoned and left ‘in limbo’, staff suffer ‘moral distress’ and patients ‘best interests’ are not being addressed e.g. patients are having on-going artificial nutrition and hydration (because withdrawal needs a complicated court application) – but are not being given antibiotics - so they have repeated bouts of untreated pneumonia over several years in an effort to ‘allow death’ without having to go to court.
- Applications to court (in the small minority of cases where they are made) are experienced as hard to understand, intimidating and slow (with a knock on effect on others considering such applications).
in journals such as 'Sociology of Health and Illness' http://onlinelibrary.wiley.com/doi/10.1111/1467-9566.12020/abstract
and 'Journal of Medical Ethics' http://jme.bmj.com/content/early/2015/09/30/medethics-2015-102777.short?g=w_jme_ahead_tab
highlighted these problems and suggested possible solutions.
Please do share with those who you think may be interested in the new research on advocacy and best interests especially with colleagues who may be able to highlight the work to relevant care providers, commissioners, family members or of course advocates who wish to make a referral.
To keep up to date with news about Jenny and Celia's range of work in this area follow them on twitter @JennyKintzinger
National Mental Capacity Forum
As many of you will know, following the House of Lords Select Committee Review on the Mental Capacity Act, the National Mental Capacity Forum was created with Baroness Finlay being appointed as chair. Sam Cox, Knowledge Officer at the Alzheimers Society has been invited to join the forum and as a result has invited many that work in the third sector, including Empowerment Matters to take part in a meeting on 18th April to look at the issues around the MCA, the work we are all doing, how to work together and most importantly how to ensure the voice of the person is at the heart of discussions. We look forward to being part of these future developments.
Care Act Guidance - updated
On 24th March, an updated version of the guidance that sits alongside the Care Act was published and can be accessed here: https://www.gov.uk/guidance/care-and-support-statutory-guidance
Advocating for people with dementia
The Care Forum are hosting an event on 3rd May in Bristol, looking specifically at advocating for people with dementia, the full programme can be accessed here: http://www.thecareforum.org/assets/files/advocacy/MH/Final-flyer-advocacy-conference-2016-A4_programme-info.pdf
Jakki will also be delivering a workshop on non instructed advocacy so hope to see many there.
Jakki recently attended the Eleventh World Congress on Brain Injury in The Netherlands http://www.internationalbrain.org/news/save-date-eleventh-world-congress-2016/
it was a fantastic and thought provoking week and we hope to share some further information that came from the event in the coming weeks. Many speakers discussing Prolonged Disorders of Consciousness (PDOC) and presenting the most up to date research in this area. It was also a real pleasure to meet Jan Lavrijsen (@JLavrijsen
on Twitter) and his colleagues from Radboud University Medical Centre. Jan is a physician in elderly care medicine and in his TED Talk from 2013 he talks about his expertise on the long-term care, dilemmas and decision making at the end of someone's life, especially concerning young patients who never regain consciousness after an acute brain injury
If anyone has any upcoming events, please do get in touch as we would be happy to share.