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 quick reminder of the work of SeeAbility

I attended some Public Health England (PHE) events in 2018, where discussions fed into PHE’s proposals for the priorities in the NHS Long Term Plan published this spring.

One event included a presentation by SeeAbility, which was a bit of an eye-opener (pun intended). The key statistic is that children with a learning disability are 28 times more likely than other children to have a serious sight problem!

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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 office@rescare.org.uk  )

I think (know) that we have said this before: They do things differently in the Netherlands (and usually it seems for the better).

According to this recent article in the Guardian the first doctor specialising in profound and multiple learning disabilities is due to be appointed in the UK later this year, following a Dutch precedent.

Read the article. It is not very long and contains some jaw-dropping observations on specialised care in the UK.

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I have just been alerted by Rescare trustees to a post on the Special Needs Jungle forum entitled ‘The emotional impact of parenting a disabled child’.

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…

Two debates this week in Parliament focused on the crisis in Special Education provision.

One particular focus was on the financial strains that  a dysfunctional system is imposing on both local authorities and parents, whilst simultaneously setting them up against each other  via a failing assessment and appeals processes. Another issue considered was the (rising) level of exclusions, and the rising level of children being educated at home by exasperated or desperate parents (as the regulatory apparatus for home-education creaks under the strain). Please follow the links cited below – but be warned that it will be difficult to avoid exasperation and anger,,,

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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”

Continue reading →

We have previously cited and endorsed journalist Ian Birrell’s scathing articles on the treatment of children and adults with autism and learning disabilities in ‘secure hospital facilities’ i.e. Assessment and Treatment Units (ATUs). 

Ian has now reacted angrily to Health Secretary Matt Hancock’s commissioning of an ‘investigation’ by the CQC  (“yet another review”)

Please now read Ian’s latest article , which first appeared in the i newspaper on 7th January and remains available on inews online.

Continue reading →

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.