I have just met someone whose relative has a LD, lives in Supported Living, has diabetes, but does not have the capacity to understand why she needs a healthy diet. Staff simply say it is ‘her choice’ to eat what she wants. What can this relative do to help her loved one stay healthy ?
I suggested asking for a mental capacity assessment, then a Best Interests meeting …
Hi - it’s such a frustrating argument - ‘it’s his / her choice’ - without any recognition of whether it is an informed choice or not (if not, it’s hardly a ‘choice’) .
Legally, the services need to assess the lady’s capacity to understand the consequences of eating an unsafe diet. This means making reasonable adjustment to the way information is presented (ie making it as accessible as possible for this lady), which may take several sessions and should involve a referral to the local Learning Disability Nursing Team and possibly to the Speech and Language Therapy team too to assess the best way of making information accessible. It also sounds like there is a training need around the MCA for the staff team.
There are some useful resources and tools in assessing capacity and supporting people from SCIE / TLAP here https://www.thinklocalactpersonal.org.uk/_assets/Resources/Personalisation/london/Supported_Decision_Making.pdf
Once the information has been provided and the capacity assessment undertaken and recorded, then if she is found to lack capacity to make the decision- then a Best Interests decision would need to be made and the outcome formally recorded. The decision needs to be made with her family and those that know her best and be the least restrictive option possible (the view of restriction would need to take in the consequences of failing to support her to eat a healthy diet e.g. visual impairment, loss of limbs etc.)
If the staff supporting her are not following the Mental Capacity Act, they are failing in their Duty of Care and can be reported to CQC / Safeguarding if their actions are felt to be putting the lady’s health at serious risk. The medical team also have a responsibility here and should be providing accessible information as per the NHS Accessible Information Standards https://www.england.nhs.uk/ourwork/accessibleinfo/
Recent coverage of the sad death of Richard Handley https://www.theguardian.com/uk-news/2018/feb/08/gross-failure-in-mans-care-led-to-death-from-constipation shows that sadly, despite publication of reports like ‘Death by Indifference’ care-providers are still failing to follow the processes designed to protect people who find it hard to make choices about their care, and the terrible consequences which may result from this.
Apologies for a lengthy response (it touched a nerve). I hope some of the information is useful.
Alix Lewer
(Specialist SaLT / Former NHS Safeguarding Lead)
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Excellent response from Alix. I remember this issue coming up on a nutrition course I was co-running. My co-facilitator just said - the person is committing slow and painful suicide. Do they understand that? Is it your job to support them in that? Confrontational but honest. I think that aside from the whole issue of staff not understanding the concepts of choice and risk, often their diets are so appalling that they do not have a clue how to enable someone to eat healthily.
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Thanks Alex, your response to the issues is spot on.
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To add to Alix’s reply, the Public Health Observatory for learning disabilities (IHaL) published an excellent guide to reasonable adjustments in diabetes care. You can find it here: https://www.ndti.org.uk/resources/useful-tools/making-reasonable-adjustments-to-diabetes-services-for-people-with-learning
There is also a guide to managing weight and obesity, which covers choice and risk.
It may also be helpful to use the Health Equalities Framework, which can help everyone involved with a person to discuss risks to health equalities: https://www.ndti.org.uk/resources/useful-tools/the-health-equality-framework-and-commissioning-guide1
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As others have said, a comprehensive reply from Alix. However, here are some links to easyread diabetes leaflets which may be helpful when discussing the issues http://www.easyhealth.org.uk/listing/diabetes-(leaflets)
Thank you so much for responses . Next step is about empowering family to feel they can speak up about this.
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Hi again
Just came across this from Diabetes UK - lots of useful info and it includes an easyread guide to diabetes that might be useful.
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