People with lived experience of enduring, disabling mental health problems say being allowed to make their own decisions around Self-Directed Support (SDS) seems more difficult for them than counterparts with physical disabilities.

This was the experience of Liam, a volunteer working for the anti-discrimination campaign See Me Scotland, recounted during a discussion at the ALLIANCE Scotland’s annual conference Equally Connected: Equally Valued around continuing stigma and discrimination in the delivery of SDS in mental health.

SDS aims to give people more choice and control over their social care, including the option to personally manage support budgets.

Liam said the people trying to help him seemed to make things worse:

“It’s like I don’t have a voice. If you like, you’re sitting there and you’re listening to what they’re talking about, but it doesn’t matter what I say, it gets rolled down because they think, because of the condition I have, you’re incapable of making these choices for yourself or looking after yourself the way that a normal person would every day.

“Someone who was disabled, if they were getting the same kind of care, they would have a say in it because their mental capacity would be deemed to be sufficient enough for them to cope and process the information. Whereas, for myself, they don’t think that I can process what they are saying and how they are trying to help me.”

Liam’s experience was backed up by a poll of those attending the conference session, 89% of whom said that, in their experience, people with lived experience of mental health problems do not have the same access to SDS as people who need support for other reasons.

Liam cited a practical example:

“At my age it can make you feel that they’re taking away your identity in a sense that they’re taking away your rights, your human liberties.”

He says he recognises that, if he is having an episode, he might give money away or spend it on the wrong things because he’s “not functioning properly”. But health and social work professionals have not handled discussions about taking over control of his finances well:

“It’s more of a kind of threat that they give you, a sort of scare tactic, telling you that they will take it off you and give it to somebody else to look after. They don’t explain to you how you meant to live, what they going to give to you, how you are supposed to buy things for yourself, clothe yourself. To me it’s always felt like a veiled threat.”

Presenting the findings of the My Support My Choice research undertaken by the ALLIANCE alongside SDS Scotland, Senior Policy Officer at the ALLIANCE, Hannah Tweed, explained a series of recommendations to prioritise the training of social workers in understanding SDS, and widen the pool of other professionals equipped to give advice on SDS to people with mental health problems.

“Some people [surveyed] said that SDS was not for people with mental health problems which is not the case in the legislation and should not be the case in practice.

“In terms of hearing about SDS for the first time, 29% told us that they had heard about it first from social work professionals.”

By contrast only 5% of survey respondents said that they had heard about SDS first from an NHS health worker.

“This was something of a surprise to us because we knew from focus groups and interviews that people with lived experience of mental health problems had a lot of engagement with medical professionals and we would have expected, and we hoped, that that number would be higher – that the first port of call might be a GP or another medical professional who could signpost social care support, SDS, as a useful enablement for independent living and other support.”

Tom Scott, improvement advisor with See Me, said he heard of a recent instance where someone with severe and enduring complex mental health problems had been told by a social worker to ‘just take your pills’– a response that, he said, can lead to unnecessary pain and suffering, and a reduction in help seeking behaviour, possibly when it’s most needed:

“It’s not that that healthcare professional was going out of their way to be mean. It could have been because of time pressure, it could have been their own mental health at that point, it could have been that they had not had enough training or space to give the person accessing the support enough informed choice and control.

“There is a myriad of systematic and environmental pressures when it comes to achieving mental health inclusion within the health and social care system. And it is that nuance and complexity that we are looking for when we talk about how to go about achieving this.”

The thematic report on mental health as part of My Support My Choice research series is being followed up with a series of localised studies.

Tom Scott says he believes there is ‘a real opportunity’ to make a difference by implementing the recommendations of the My Support My Choice report:

“Change and improvement is always a slow process and especially with something as intangible as mental health stigma and discrimination, but Liam’s testimony provides the impetus, because change and improvement is needed now. It is a slow process, but it is needed straightaway.”

 

The thematic report on mental health of the My Support My Choice research is published on the ALLIANCE’s website.

healthandcare.scot is pleased to be the media partner for the ALLIANCE’s Equally Connected: Equally Valued Conference.

 

Other reporting on SDS: Excessive bureaucracy holding back social care; Independent care providers set out election asks; Significant cash boost for Independent Living Fund; Report of our Seminar: what next for self-directed support?

 

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