The following text was received from a long-standing Rescare member. As a parent and carer, she contributed to our anthology ‘Bound to Care’, first published in 1996, which collated the experiences of eight family carers. So 23 years later, we can update you with the further experiences on one particular family.
Note that we at Rescare have not edited the text received, other than to correct some spelling errors, to change the layout slightly to improve legibility, and to anonymise the text – so that the author’s daughter is now referred to as ‘P’. No part of the text may be reproduced without the author’s permission.
Fifty years of Downs Syndrome, a parent’s account. Continue reading
Some news on proposals for legal reform, from north of the border, where they do things differently.
There was an interesting debate in the Scottish |Parliament this week on improving the support for people with dementia and their carers. But Some SMPs broadened the debate to include a general consideration of the laws relating to capacity and incapacity, and the Scottish versions of powers of attorney and guardianship.
I was struck by this contribution from SMP Graeme Day and particular his observations for the need for reform of the laws relating to mental capacity: Continue reading
A final reminder that Rescare will be holding a special meeting this Saturday at the NCVO buildings near Kings Cross.
The main theme is Learning Disability and the Law, but other current issues will be discussed.
The meeting is open to Rescare members and non-members. Members were notified via a flyer enclosed with the recent edition of Resnews.
For the information of others, here are images of that flyer, giving full details of agenda, time and location.
If you are thinking of attending, please notify us (email firstname.lastname@example.org )
The article cites especially the resources available on the website Affintyhub.uk , created by Jo Griffin, a Counselling Psychologist and a parent carer. Here, when faced with (sadly typical) feelings of frustration, helplessness, anger, guilt and isolation, parents can be assured that they are not alone in these, and seek reassurance and strength by learning of the experiences of others, through resources linked to its ‘Words of Wisdom’ page .
Jo Griffins contribution to the article includes not only links to the results of others’ research into this topic, but also the results of her own research, published on Affinityhub.uk . Her concise 6-page report is well-worth reading.
The article concludes with Angela’s list of her own ‘therapeutic strategies’: Be realistic, Self-Care, Become aware of unhelpful feelings, Remember that feelings pass, Good nutrition, Trust your parenting, Quiet the inner critic. Read the article in full for Angela’s advice in each of these categories.
Affinityhub.uk , from what I can seen so far, offers a wide range of useful resources for parent carers. I have just made a note to add it to the Rescare ‘resource library’ as soon as possible…
Warning this is a bit complicated! “The dividing line between the use of the MHA and the MCA DOLS is fiendishly complicated (a senior judge described it as like putting your head inside a washing machine and spin dryer)”.
Lucy Series (legal expert, academic and blogger) has just published a thorough but informative blog article on Psychiatric Detention under the Mental Capacity Act 2005.
- She explains that psychiatric detention takes place under the Mental Capacity Act as well as the Mental Health Act 1983, but with weaker procedural safeguards
- She emphasises that psychiatric detention under the Mental Capacity Act 2005 mainly affects people with dementia and learning disabilities
- She expresses over proposed legislative changes e.g. Mental Capacity (Amendment) Bill: “Current and proposed reforms to mental health and capacity laws will weaken safeguards and support for thousands of people with dementia or learning disabilities in psychiatric settings”
Having recently attended events organised by Public Health England around the topic of how to improve the health and consequent life expectancy of people with a learning disability, and aware of the findings of previous research on the issue stretching back beyond the Marmot Report of 2010, (sadly) I was not surprised by the contents of a report just published (5th Nov) by University College London (UCL) Institute of Health Equity (IHE), entitled ‘A Fair, Supportive Society’
This is how the Press Release for the Report introduced its findings:
Shocking new report on children with learning disabilities: Half aren’t diagnosed in childhood; those who are won’t collect their pension.
A new report published today, 5 November, by the UCL Institute of Health Equity (IHE) shows the Government’s emphasis on ‘fairness’ and fixing a ‘broken society’ has failed, catastrophically, for hundreds of thousands of children with learning disabilities. The IHE report A fair, Supportive Society shows the most vulnerable in society – those with learning disabilities – will die 15-‐20 years sooner on average than the general population –that’s 1,200 people every year.
More shocking, explains the IHE’s Director, Professor Sir Michael Marmot, is the fact that this difference is not an inevitable consequence of the underlying condition that led to the learning disability…
The Report itself, available on line here. Perhaps, just take a look at its Executive Summary and Recommendations (pages 6-9)
As Professor Sir Michael Marmot, Director of the IHE states: “Much of the action to improve the social determinants of health for those with learning disabilities will also improve health for others at higher risk of ill health because of social disadvantage. Therefore the actions recommended here will not only improve lives and health outcomes for a highly vulnerable group, people with learning disabilities, but could also help to reduce inequalities in health across thepopulation. The time to act is now.”