Social prescribing is a lovely idea but it won’t make up for the care I’m not getting

30 Jan

Social prescribing can only play a limited role in helping folks living with serious mental ill-health

 

A news story on social prescribing boomed out of my radio on Monday morning – another jolly report about how this was the way to manage long-term conditions in the community. NHS England had announced a plan to roll out the scheme across the country by recruiting 1,000 social prescribing “link workers” to support GPs and help people improve their health and well-being. It felt alienating, because of my own personal experience of social prescribing.

On the face of it, social prescribing is a good idea – a supplemental service for people with long-term conditions. People with mild to moderate conditions who live in areas where suitable activities are available but who struggle with online searches and need a bit of guidance and motivation may well benefit. Having someone to signpost them to local activities can help them start to improve their general well-being.

The main beneficiary of social prescribing will be GPs – the NHS England announcement was headed “An army of workers to support family doctors” for good reason. Hard-pressed GPs will be able to refer patients to someone else and free up their consulting room at a time when we face a GP shortage.

However, there are a number of problems with social prescribing, especially as it impacts on people with serious long-term mental ill-health.

I speak from personal experience. I live with serious long-term mental ill-health and am currently poorly. NICE guidelines and local healthcare policy specify that I need and should be provided with ongoing care for my ongoing serious health condition. However, I was recently discharged from the community mental health team altogether, to nothing. People with serious chronic physical health conditions would not be discharged from specialist services in this way.

What helps me to is a combination of specialist services, mainstream resources and things that everyone needs like an income, a roof over your head, friends, a spiritual life and meaningful activity.

I first came across social prescribing in 2015. Access to the specialist day centre for people with severe and enduring mental illness (such as schizophrenia and bipolar) I’d been attending since being sectioned had been withdrawn as a result of council funding cuts.

When I asked my GP what I should do now, she referred me to their social prescriber scheme. It turned out to just be sign-posting by a “well-being coordinator”. They’d simply done an online search of a public database of activities in the local area that were open to the general population.

The activities were the sort of thing you’d find advertised in your local library or coffee shop, like exercise, art and ballroom dancing classes, history groups, chess clubs, yoga and gardening groups, run by local businesses or community groups.

The activities they proposed were completely inaccessible to me as a disabled person. In addition, many of the activities required payment (the specialist centre was free at the point of use). The result was that people like me, who had previously been supported to lead full lives despite our serious long-term mental illness, were left sitting at home, staring at the TV.

Shortly after that, I moved to a new area where there was also a GP social prescribing service. The local area has no activities that people with severe mental illness could be referred to, so all I was offered was a mainstream exercise referral scheme lasting a few weeks. I was not able to take this up because my disability means it is completely inaccessible.

What do I mean by “inaccessible”? It can be hard for people who don’t have lived experience to understand why community activities may be inaccessible for those of us living with serious mental ill-health. It’s not that they are scheduled to take place at inconvenient times or are not on a bus route – living with serious mental illness can be just as debilitating as physical disability. The experience of serious mental ill-health varies hugely, and people have different triggers and barriers. As Mark Brown (@MarkOneinFour, writer in residence at the Centre for Mental Health and mental health writer) says:

“When you experience more severe mental health difficulties, it can be hard to access everyday community activities. Not because of times or locations, but because you know you have different requirements that you’d have to explain and put out in the open to people who still might not understand. You might need extra support, have challenges doing things like speaking out loud or doing things that involve touch. You might need to be able to leave at any time, or have extreme challenges feeling safe or supported. It’s difficult to trust that an open community activity will provide that and that people won’t treat you as a second class citizen.

“Sometimes things people with more severe mental health experiences need go beyond encouragement and being friendly and actually require specialist support and care from people trained to provide that.

“Sometimes opportunities run by people who have also lived with mental health difficulty and distress can be a better option, but many have closed due to lack of funding over the last decade.

“Without a lot of planning, community activities cannot, and should not, be an alternative to professional support. Severe mental illness really is severe.”

Social prescribing exemplifies a wider issue in mental health care: money is being put into services for folks with mild to moderate conditions at the same time as services for serious mental ill-health are slashed. Effectively, money is being transferred from the latter to the former.

One issue is that it overlooks what’s already there, including occupational therapists and social workers. This is the work they are trained to do and have been doing for years, and I don’t think they have even been consulted for their views. Recruiting low-paid link workers to signpost people is not equivalent to their expertise.

The main issue, however, is that social prescribing is being rolled out after a decade of cuts to core community mental health services. People living with long-term serious health problems – whether physical or mental – need long-term care, treatment and support. We are losing our specialist services while what’s on offer via social prescribing is inaccessible. We are being left high and dry.

Cutting care and support to people with the most serious health problems is inherently risky. People with severe mental ill-health already die 15 to 20 years early from preventable physical causes. Despite government announcements of increased funding for some specific services (such as perinatal mental health care), funding for core community mental health services continues to be cut and those services are being hollowed out.

Requiring people with serious health conditions to get sicker before any help is provided, and discharging people while we are still seriously poorly, is hugely detrimental. The result is people are forced to suffer needlessly and may never get back on our feet. How cruel. What a waste.

Nationally, just yesterday Health Services Journal reported that Early Intervention in Psychosis services – these are for seriously unwell people who are having their first experience of psychosis and urgently need help – had begun limiting access by raising referral thresholds, limiting the age range and discharging people earlier. This is a flagship policy in the government’s mental health plans and does not have sufficient funding to realise its targets.

I have experienced good care, and I know what a difference it can make. Before I moved here, I lived in an area where there were (formerly) multiple resources that supported folks who were living with serious chronic health conditions.

At the specialist day centre, as well as a range of fantastic activities, I could mix with people who understood, I didn’t have to try to ‘pass for normal’, could go whether my health was good or bad, and had the opportunity to volunteer. Equally important was support from the community mental health team, offering care coordination, medication, talking therapy, welfare benefits support and social care support; my GP practice; supported cooking classes; specialist mental health support workers; and supported exercise classes. Each of these was vital to enable me to manage my severe mental health problems.

People with mental ill-health require input that crosses services boundaries. The specialist and supported provision I received before had gradually enabled me to engage with a couple of mainstream activities – but it took a long time to build towards that, and there would be backwards steps during periods of ill-health when I would need to start from scratch again.

Being left with nothing but inaccessible mainstream activities aimed at the general public means that these days I have barely any interaction with the community. I am at home almost all the time. The only people I see are my support workers. I am further from health and the workplace than ever.

Social prescribing will not help me with that.

 

References:

[1] NHS England – Army of workers to support family doctors (28 January 2019)

[2] Health Services Journal – Trusts ‘limiting access’ to psychosis servicesHealth Services Journal – Trusts ‘limiting access’ to psychosis services (29 January 2019)

 

With thanks to Mark Brown for expert editing.

 

The above is the text of a piece I was commissioned to write for a national publication which I was told today would not be run. I didn’t want my efforts to go to waste!

 

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Storify – Broken page links

12 Jun

Storify 2

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Please note that, throughout this blog, I make extensive use of twitter conversations saved on Storify – I used that site for years to help me collate my thoughts and save conversations with others. Sadly, Storify closed in 2018 so those links no longer work.

However, I have saved all my Storify stories on another site, so the work is not all lost. What I haven’t done is go through the website replacing all the links. Therefore, if there are any particular Storify stories you would like to look at, contact me and I will see what I can do!

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Storify 3

 

 

Dear All Pharmacists – On privacy and trust

23 Sep

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I was so upset yesterday about a breach of my privacy at a pharmacy (not the first one) that I ranted on twitter – and it seemed it struck a chord with other patients. Pharmacists who responded were horrified by the breaches discussed. The conversation continued on twitter all day yesterday, and continued into today. I’ve captured all the tweets in the links below (“All tweets”), and have curated too:

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Related links:

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Some responses from patients on their experiences of breach of privacy:

 

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#StateofMH

20 Jul

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cqc state of mh 1.

On today’s report by the Care Quality Commission on the state of mental health care in the UK

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Related links:

Documents:

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Tweets:

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Stay away

10 Jul

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No visits till the meds kick in 1No visits till the meds kick in 2No visits till the meds kick in 4

No visits till the meds kick in 5

 

No visits till the meds kick in 7

No visits till the meds kick in 8

No visits till the meds kick in 9

No visits till the meds kick in 10

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No visits till the meds kick in part 1 and part 2.

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#MHQT

6 Jul

Here are all the tweets on the hashtag #MHQT from the panel debate and discussion on women and mental health at UCL on Wednesday 5th June 2017.

1) https://storify.com/SectionedUK/10-women-and-mental-health

2) https://storify.com/SectionedUK/2-mhqt

3) https://storify.com/SectionedUK/3-mhqt

4) https://storify.com/SectionedUK/4-mhqt

5) https://storify.com/SectionedUK/5-mhqt

6) https://storify.com/SectionedUK/6-mhqt

7) https://storify.com/SectionedUK/7-595d80759ddbba67e3a94e3f

8) https://storify.com/SectionedUK/mhqt-595d81909ddbba67e3a951ca

 

 

 

Women and mental health

4 Jul

Here are some thoughts of mine and of the lovely twitter people on the topic of women and mental health. No editing, hoovered up all the tweets during a particular timeframe. Enjoy!

On 9th June, I asked the question “How do mental health services need to change to better meet the specific needs of women? Suggestions please!”

Here’s the conversation that ensued over the next couple of days.

(1) https://storify.com/SectionedUK/1-women-and-mentalhealth

(2) https://storify.com/SectionedUK/2-women-and-mentalhealth

(3) https://storify.com/SectionedUK/3-women-and-mentalhealth-593c440f4de69fe737df9d06

(4) https://storify.com/SectionedUK/4-women-and-mentalhealth

(5) https://storify.com/SectionedUK/5-women-and-mentalhealth

(6) https://storify.com/SectionedUK/6-women-and-mentalhealth

(7) https://storify.com/SectionedUK/7

(8) https://storify.com/SectionedUK/3-women-and-mentalhealth

(9) https://storify.com/SectionedUK/9-women-and-mental-health

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