Notes on Mental Health Service User Involvement – How Tos

Not everyone wants to be involved at all levels of participation. Focus Groups and Surveys can help people be involved.

A Ladder of Citizen Participation - Sherry R Arnstein - http://lithgow-schmidt.dk/sherry-arnstein/ladder-of-citizen-participation.html

There is a need for payment for time to ensure people have enough to live on. Combining this with assistance to find good advocacy to assist with work and benefit rules. Without payment numbers and range of people will be limited, limiting views and hindering equalities.

Need for equalising between regions of NHS AWP but not by levelling down, it's OK for some regions to be ahead.

Service Users should be contacted about involvement unless they opt out, giving everyone an opportunity to be included. This also helps with equalities and diversity, and with numbers and range of opinions

NHS HITs (Health Integration Teams) are another good model e.g. -

The Psychosis Health Integration Team - http://www.bristolhealthpartners.org.uk/health-integration-teams/psychosis/ - working together to improve the lives of people with psychosis in Bristol

Links between mental health service providers and service user and carer involvement and NHS and Universities PPI (Patient and Public Involvement) are important, including both participation and training.

Encouraging local groups - Mentoring but not running the groups. Mentoring should involve arranging rooms, food and drink, and admin assistance with expenses forms and rules.

Links with participants in all providers general and specific are needed.

Good payment and proactive signposting to advocacy can help service users and carers with their problems of being on low incomes, this is a very common problem, and worsens mental health.

BBC News - Mental health and debt problems: 'A marriage made in hell' - http://www.bbc.co.uk/news/health-35721477

Guidance for Involvement

Bath Service User Charter, good to ask about this?

4PI involvement standards - National Survivor User Network - http://www.nsun.org.uk/assets/downloadableFiles/4pi.-ni-standards-for-web.pdf

BBC- NHS should welcome 'citizen whistleblowers' - http://www.bbc.co.uk/news/health-30333071 - Healthwatch England-Why NHS should listen to 'citizen whistleblowers'

Mental health service users should help shape support services - https://www.theguardian.com/healthcare-network/2014/apr/09/mental-health-service-users-shape-services?CMP=twt_gu - handbook offers guidance to Healthwatch organisations

Time to Change Campaigning has helped Peter Hale gain a sense of fulfilment and achievement

Bristol Anti Stigma Alliance (BASA)

A few years ago I went through a challenging time as I lost my job, my marriage ended and I
experienced housing problems. All of this led to me being diagnosed with anxiety and
Depression. Soon after this I became involved in the Time to Change Campaign, and have been involved ever since.

As part of my physical and mental recovery I started playing football and walking with Bristol
Active Life Project (BALP) and still enjoy playing football for the BALP team to this day. I also
accessed the Improving Access to Psychological Therapies Service through what is now the
Wellbeing Therapy Services.

I’ve been a Service User/Lived Experience Representative with Bristol Independent Mental
Health Network (BIMHN) since the organisation was set up in early 2015. BIMHN and Wellbeans promote Time to Change locally. I As well as this I’m a Representative for Rethink, a Time to Change campaigner, and a Peer Mentor with Second Step.  So I'm involved in mental health awareness as a service user rep, and as a campaigner. These roles give me a sense of fulfilment and achievement. This involvement such as for Time to Change has given me many opportunities to take part in free training, such as speaking out, media, organising Time to Change events, peer mentoring, mental health first aid, and suicide prevention, which I’ve found really useful.

I volunteered for Time To Change at Cabot Circus shopping centre for World Mental Health week October 8th 2016, where we spoke to 397 people about mental health in a successful event. I also spoke about my experiences of exercise and Mental Health at a World Mental Health Day MIND conference about exercise and mental health, at Exeter City's St James Park ground on World Mental Health Day October 10th. I was also at the Bristol PRIDE Festival earlier this year, and have campaigned at these events- St Pauls Carnival, Bristol Harbour Festival, other events at shopping centres, supermarkets, leisure centre, and ran a stall at Cabot Circus as part of the Blue Monday event January 2016, run by Pennywise to assist people with Winter blues and money issues.

Recently, I’ve also been diagnosed with high functioning autism or Asperger’s syndrome.
Asperger’s isn’t an illness but a difference in thinking, perception and senses. I’ve been accessing
social groups for people with these conditions. This helps me to socialise, deal with benefits,
volunteering and work issues, and understand my own and non-autistic people's communication needs. I'm now involved with service user activities and research into autism as well as into mental health issues. All this has helped me prevent re-occurrences of the crises I’ve experienced in the past and encouraged me to focus on the present and future. I now have a well-balanced life that consists of rewarding activities that keep me physically and mentally fit.

Bristol Mental Health - Case study - Service user involvement has helped Peter Hale gain a sense of fulfilment and achievement

Bristol Mental Health - Case study - Service user involvement has helped Peter Hale gain a sense of fulfilment and achievement -  http://bristolmentalhealth.org/media/828903/peter-hale.pdf

Case study
Service user involvement has helped Peter Hale gain a sense of fulfilment and
achievement.

A few years ago I went through a challenging time as I lost my job, my marriage ended and I
experienced housing problems. All of this led to me being diagnosed with anxiety and
depression.
As part of my physical and mental recovery I started playing football and walking with Bristol
Active Life Project (BALP) and still enjoy playing football for the BALP team to this day. I also
accessed the Improving Access to Psychological Therapies Service through what is now the
Wellbeing Therapy Services. This was a great help to me too.
Since my diagnosis I’ve become really involved in helping to shape mental health services in
Bristol and ensuring that service users are involved in this. My first experience of service user
involvement was through Healthwatch, and I’m now also involved with Bristol Mental Health
(BMH) and Avon and Wiltshire Mental Health Partnership NHS Trust (AWP). For example, I’m
part of the Joining the Dots Care Planning Project and am helping shape AWP’s service user
strategy.
I’ve been a Service User/Lived Experience Representative with Bristol Independent Mental
Health Network since the organisation was set up in early 2015. In this role I attend lots of
meetings, many of which are with BMH, to share my experience and knowledge of mental health
services in order to help them be the best they can be. As well as this I’m a Representative for
Rethink, a Time to Change campaigner, a Peer Mentor with Second Step and a lot more
besides! All these roles give me a sense of fulfilment and achievement. These roles have also
given me many opportunities to take part in free training, such as peer mentoring, mental health
first aid, and suicide prevention, which I’ve found really useful.
I have a PhD in Computing and I use many of the skills I developed from this as a service user on AWP’s research committee and in my involvement in research and development projects
through this. AWP’s Research and Development Team carry out research about preventing,
treating and managing mental health problems, dementia and addictions the findings of which
are used in clinical practice.
Recently, I’ve also been diagnosed with high functioning autism or Asperger’s syndrome.
Asperger’s isn’t an illness but a difference in thinking, perception and senses. I think in a
systematic way, communicate differently, get distressed by chaotic environments and badly
managed change, and don't pick up on nuance and body language well. I’ve been accessing
social groups for people with these conditions. This helps me to socialise, deal with benefits,
volunteering and work issues, and understand my own and non-autistic people's
communication needs.
Asperger’s is an advantage for the type of work and volunteering I do but for many social
situations it can be a disadvantage. I have different triggers for anxiety and a resilience to
many stresses that other people experience. I'm now involved with service user activities and
research into autism as well as into mental health issues. All this has helped me prevent reoccurrences of the crises I’ve experienced in the past and encouraged me to focus on the
present and future. I now have a well-balanced life that consists of rewarding activities that
keep me physically and mentally fit.

Bristol Crisis Line Crisis

Here are all the links I no about in one place for the Crisis line Change/Closure issue -

Bristol Mental Health Services - Protect our Crisis Line in Bristol! - https://you.38degrees.org.uk/petitions/protect-our-crisis-line-in-bristol?bucket=blast&utm_source=&utm_medium=email&utm_campaign=blast2016-09-06 - Campaign - created by - Tom Renhard

Crisis line is closing: BMH criticised for ‘unclear communication’ via @TheBristolCable - https://thebristolcable.org/hyq

Bristol’s crisis line set to close - http://bimhn.org.uk/news/bristol-crisis-line-closure/ - August 18, 2016 - Bristol Independent Mental Health Network

Mental health crisis line to close – oh, wait… via @TheBristolCable - https://thebristolcable.org/92q

Bristol Independent Mental Health Network (BIMHN) - Our response to latest Crisis Line Statement - http://bimhn.org.uk/news/response-latest-crisis-line-statement/ - August 27, 2016

Equal Opportunities by patronising people - the role of Government

I wish UK Government would try to explain to the US Civil Rights Movement and the Disability Rights and Peer Mentoring Movements that sprang up worldwide, how UK Government invented all this themselves and know what's best for us all. How it needs Government to Empower us, because we can't do this ourselves. They can explain it needs white people to Empower black people, able bodied to Empower disabled people, straight people to empower LGBT&Q people etc. They can explain that we need our health assessed by private companies because we and the NHS have never been able to do this for ourselves. They can explain why Maslow was wrong and we get incentivised by stick not carrot. That we can all focus on aspiration and positivity even with no money and no home to call our own. Because if Government tried to explain all that they'd be more in touch with how much of a stupid, arrogant plagiarising load of out of touch fools they are!

Are we Human? - Why UK should stay in the European Convention on Human Rights

UK is signed up European Convention on Human Rights (ECHR) - https://en.wikipedia.org/wiki/European_Convention_on_Human_Rights administered by European Court of Human Rights (ECtHR) - https://en.wikipedia.org/wiki/European_Court_of_Human_Rights

The only qualification to be covered by the European Court of Human Rights is to be a human being.

Mainly Conservative politicians on both sides of the EU Referendum debate advocate withdrawing from the European Convention on Human Rights (ECHR). Though one of their former ministers who has the most expertise in this area opposes this. He was removed for being too pro ECHR - 

BBC News - Labour wants Grieve human rights advice to PM published - http://www.bbc.co.uk/news/uk-politics-28439349 - 23 July 2014

Dominic Grieve fears Tories will dilute UK’s commitment to human rights law - http://www.theguardian.com/politics/2014/sep/26/dominic-grieve-tories-human-rights-commitment via @guardian - 26 September 2014

Human Rights Act: Former Attorney General Dominic Grieve rubbishes 'unworkable' Tory plans to scrap ECHR - http://www.independent.co.uk/news/uk/politics/a-conservative-government-would-not-put-up-with-european-meddling-on-human-rights-rulings-says-justice-secretary-9771608.html - 3 October 2014

Another expert Sadiq Khan of Labour (now the Mayor of London) also warns against the - “catastrophe of walking away from the European Convention on Human Rights”

Britain's commitment to human rights is in severe peril | Sadiq Khan -  http://www.theguardian.com/commentisfree/2014/jul/20/sadiq-khan-european-convention-on-human-rights via @guardian - 20 July 2014

This Guardian opinion piece expresses the view on why Human Rights are so important - “The Human Rights Act is a source of pride. It is a civilised and a civilising law. It embodies the fact that Britain remains a nation where key universal benchmarks of human decency and protections against state abuse are upheld by the courts – upheld, in some cases, against governments that may be tempted to bow the knee to newspapers demanding arbitrary abuse of rights. In the Guardian’s view, the Human Rights Act should be defended and not repealed.”

The Guardian view on scrapping the Human Rights Act - http://www.theguardian.com/commentisfree/2014/oct/03/guardian-view-scrapping-human-rights-act-dangerous-jumble via @guardian - The Tories are not interested in sensible reform - 3 October 2014

Amnesty UK gives these reasons for supporting the Human Rights Act, which brought UK under the remit of ECHR -

“1. Making ‘never again’ a reality

2. Protecting us at our most vulnerable

3. Protecting women from domestic violence and keeping their families together

4. Making it safer to be gay

5. Confirming that innocent means innocent

6. Helping us challenge these injustices in the UK courts

7.….and challenge that decision at a higher court

8. Allowing the UK to take a stand for human rights everywhere”

Eight reasons why the Human Rights Act makes the UK a better place - https://www.amnesty.org.uk/eight-reasons-why-human-rights-act-has-made-uk-better-place-british-bill-of-rights via @amnestyuk

For point 4 Pink News supports this argument - 

Professor Robert Wintemute “warns against plans by the Conservative Party to withdraw Britain from European arrangements protecting human rights as it could have serious repressions for the LGBT community.”

Comment: The Tories should not withdraw Britain from the European Convention on Human Rights - http://www.pinknews.co.uk/2014/01/06/comment-the-tories-should-not-withdraw-britain-from-the-european-convention-on-human-rights/ via @pinknews - 6 January 2016

ECHR also provides a way to oversee protection against racial discrimination such as in the workplace - 

BBC News - Human rights inquiry over Met Police discrimination case - http://www.bbc.co.uk/news/uk-england-london-29319791 - 23 September 2014

Further, ECHR oversees protection against disability discrimination, for both visible disabilities and less visible such as mental health issues - 

Outrage over ‘horrifying’ and ‘miserable’ plans to scrap Human Rights Act  - http://www.disabilitynewsservice.com/outrage-over-horrifying-and-miserable-plans-to-scrap-human-rights-act/ - By John Pring - 19 May 2016

Mental health advocacy & human rights: your guide - https://www.bihr.org.uk/mental-health-advocacy-and-human-rights-your-guide - British Institute of Human Rights

UK 'sleepwalking into violating disabled people's human rights' - http://www.theguardian.com/uk-news/2014/jul/07/uk-sleepwalking-violating-disabled-peoples-human-rights-charities via @guardian - Welfare reforms break UN convention - 7 July 2014

A particularly dangerous area for Human Rights and greatly affecting those with disabilities are the UK Governments policies towards people on sickness benefits for example Employment and Support Allowance (ESA) -

Fitness to work test DOES disadvantage mentally ill: Court of Appeal upholds ruling against Government - http://www.independent.co.uk/news/uk/politics/fitness-to-work-test-does-disadvantage-mentally-ill-court-of-appeal-upholds-ruling-against-8983121.html - 4 December 2013

Work programme 'incompatible' with EU human rights laws, says judge | via @Telegraph - http://www.telegraph.co.uk/news/politics/10945856/Work-programme-incompatible-with-EU-human-rights-laws-says-judge.html - Retrospective legislation - 4 July 2014

BBC News - High Court challenges UK work schemes - http://www.bbc.co.uk/news/uk-politics-28158483 - emergency laws "incompatible" with European Convention on Human Rights - 4 July 2014

The Government should conduct an investigation into the Sanction Culture at Job Centre Plus: https://annebegg.wordpress.com/2014/07/10/the-government-should-conduct-an-investigation-into-the-sanction-culture-at-job-centre-plus/ via @annebegg - 10 July 2014

Theresa May wrongly asserted that a Human Rights case about family rights was about a cat - 

Guardian - Reality check: can owning a cat be grounds for appeal against deportation? http://www.theguardian.com/politics/reality-check-with-polly-curtis/2011/oct/04/reality-check-cat-theresa-may

Theresa May speech laying out plans to scrap the Human Rights Act re-surfaces on the internet - http://www.independent.co.uk/news/uk/politics/theresa-may-speech-that-laid-out-plans-for-the-future-deleted-from-the-internet-a7137496.html

I'll look out for further articles and cases about this and would be interested in any news about this. I'm at @petervhale

Bristol is one of the few councils stupid enough to oppose giving tents to homeless people

Bristol is one of the few councils stupid enough to oppose giving tents to homeless people -

http://www.bbc.co.uk/news/magazine-36082945?post_id=10153581589642289_10154522615607289#_=_

Bristol City Council actually thinks it's OK to prevent homeless people from accessing tents because they might engage in antisocial behaviour.

"Bristol Council has warned that charities and organisations urging the donation of tents to rough sleepers are encouraging anti-social behaviour and might be delaying those in need from seeking help."

Bristol City council has never explained to me why people should stop seeking help with their health and housing just because they have a tent. Given that I am a mental health rep and activist who attends meetings with this council, they have had ample opportunity.

It seems their logic failure is that they believe people will only engage in antisocial behaviour if they own a tent. Here is the quote for their policy that is now open, which they previously kept secret.

"The average age of death for a rough sleeper in England is just 47. Bad weather and fear of attack make life difficult and uncertain."

Yet Bristol City council thinks it's more important to concentrate on stigmatising homeless people than trying to increase their life expectancy to be somewhere higher than 47 years. Something of a moral and ethical behaviour failing that indicates their policy makers don't understand the norms of social behaviour, and the law.

"Many of those living outdoors in towns and cities have addictions and mental health problems."

Given this problem you would think that all councils would want to ensure homeless people have somewhere to live so that they have an address where relevant services can contact them.

Some homeless shelters are only available at night, it can still be cold in the daytime.

Obviously a tent is no substitute for a home, but Bristol City council have built less than 100 social homes and sold many. There is also a complete lack of a common sense reciprocal housing provision agreement between Bristol City Council and South Gloucestershire council. This results in people having access to housing lists for properties many miles away but not to those in the next road.

I'm a member of BIMHN - Bristol Independent Mental Health Network - http://bimhn.org.uk/ - this is both an organisation in itself and a network for other mental health service user groups to put across their views. Therefore no policy should be adopted without prior agreement from our members and allies.

The official UK policy of  No decision about me, without me - http://www.kingsfund.org.uk/publications/making-shared-decision-making-reality and of Parity of esteem for Mental Health is breached by this council policy.

Of course it is not acceptable to discourage any charities from providing tents and/or shelter boxes, as has been proved during many crises abroad and in Brighton these options are better than doing nothing - http://www.theguardian.com/housing-network/2013/oct/24/brighton-housing-homeless-shipping-containers

I hope that people bear this policy in mind when they vote in the elections tomorrow in Bristol, or nationally and in future where and when politicians and officials have such an unethical housing policy.

Update

I hope the election of a new Mayor who understands homelessness, equalities, and mental health issues will lead to a change in Bristol City Council's 'Can't Do' attitudes and policies.

Labour's Marvin Rees has been elected as Bristol city's mayor http://www.bbc.co.uk/news/uk-england-bristol-36236036

Second Update

This article shows which official is behind this policy, ironically he is also responsible for ensuring Bristol provides social housing.

Bristol's homeless campers could have their tents confiscated and face court action

By EsmeAshcroft1  |  Posted: January 23, 2016 - http://www.bristolpost.co.uk/8203-Bristol-s-homeless-campers-tents-confiscated/story-28590621-detail/story.html

The Service Director for Housing believes that Bristol City Council has the powers to make optional hostel and/or mental health services compulsory - 

'Anyone who refuses to work with the council-commissioned rough sleeping service provided by St Mungos Broadway, or is deemed to be acting antisocially, will also face legal action.

Nick Hooper, service director for housing solutions and crime reduction at Bristol City Council, said: "As with other cities and towns in the UK we are currently experiencing high levels of rough sleeping and there has been an increase in rough sleepers, including those sleeping in tents, in the city this year."

'Tent City' decision: Mayor admits city has housing problem - http://bbc.in/2cfURnu via @BBCNews

BBC News - Homeless too often given 'meaningless advice' by councils - MPs - http://www.bbc.co.uk/news/uk-england-37110607

BBC News - 'Tent City' community faces eviction from Bristol park - http://www.bbc.co.uk/news/uk-england-bristol-37194168

Creator of chatbot that beat 160,000 parking fines now tackling homelessness - https://www.theguardian.com/technology/2016/aug/11/chatbot-lawyer-beat-parking-fines-helping-homeless-do-not-pay?CMP=share_btn_tw

BBC News - Taking mental healthcare to the homeless - http://www.bbc.co.uk/news/uk-37238599

BBC News - More rough sleepers 'in need of psychiatric support' - http://www.bbc.co.uk/news/uk-37236035

BBC News - Abandoned Leeds Festival camping gear given to homeless - http://www.bbc.co.uk/news/uk-england-leeds-37254085

BBC News - Mentally-ill homeless discharged back to street -  http://www.bbc.co.uk/news/uk-37249818

 I need to check what happens in Bristol to stored tents that aren't reclaimed