Power Up! News
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PowerUp! is a service user led project helping black and minority ethnic and lesbian, gay, bisexual and transgender communities in London engage with the mental health personalisation agenda
Power Up Almost Final Report
Read Raza's almost final report detailing the work of PowerUp!. This report will be finalised after the BME Personalisation event. Read report
NOVEMBER POWERUP! UPDATE
November Update in Word Format.
LGBT PERSONALISATION SEMINAR
PowerUp! has been working with the Lesbian Gay Bisexual and Transgender (LGBT) Consortium to put the final touches to the planned seminar entitled "This time it’s Persona"l on 5 December. There will be a policy and practice update from Shahana Ramsden who is working around co production and equalities at Think Local Act Personal (TLAP), Sarah Carr of Social Care Institute for Excellence (SCIE) who has written widely on personalization including the SCIE Rough Guide to Personalisation, NAZ Project which will look at issues of multiple identity for LGBT people from black and minority ethnic communities and legal perspective on using recent legal changes to challenge decisions about services which disadvantage LGBT communities. There are still some places left
COUNCILS NEED TO PROMOTE DIRECT PAYMENTS
There have certainly been a lot of developments that will inform the seminar. These include Think Local Act Personal’s new guidance highlighting the need for Councils to better promote Direct Payments and help people take real choice and control, rather than just putting everyone on a notional Personal Budget.
TLAP’s guidance focuses on what Councils can do to increase uptake of DPs, like:
• Better information about DPs
• Less bureaucracy including on how DPs are spent and refraining from over –monitoring how recipients spend the DP
• Listening to the wishes of people on managed budgets
• Acknowledging the role of peer support in increasing peoples’ confidence to use a DP
The guidance acknowledges that Councils are cash strapped but emphasizes that DPs if evaluated properly often save money in the longer term, and also stresses that Councils will continue to have an important role in ensuring ongoing care even if they are not the service provider. TLAP will measure progress in promoting DPs against a number of indicators in a survey next year and is organizing a series of regional events on what needs to be done to promote DPs.
Dates and Venues for Direct Payment Events
Eastern 22nd November
Homerton Conference Centre, Homerton College, Cambridge, CB2 8PH
Tel: 01223 747122
London 24th November
London Councils, 59 Southwark Street,, London, SE1 0AL
Tel: 020 7934 9975
South West 1st December
Exeter Conference Centre,, Northernhay Street, Exeter, Devon, EX4 3ER
Tel: 0751 7422045
South East 8th December
Southampton Solent University Conference Centre, St James Matthews Building, 157-187 Above Bar Street, Southampton, SO14 7NN
Tel: 023 8031 9000
North West 17th January
Breakthrough UK, Aked Close, Ardwick Manchester M12 4AN
Tel: 0161 273 5412
West Midlands 24th January
RNIB Concept, 58-72 John Bright Street, Birmingham B1 1BN
Tel: 0121 665 4250
North East 15th February
The Assembly Rooms, Fenkle Street, Newcastle upon Tyne, NE 5XU
Tel: 0191 232 8695
East Midlands 22nd February
The Riverside Centre, Riverside Court, Pride Park, Derby DE24 8HY
Tel: 01332 332044
PERSONAL HEALTH BUDGETS EVALUATION REPORT
Another major national development in personalization has been the publication of the 4th interim independent evaluation report on Personal Health Budgets in pilot sites within the NHS The findings show improved health outcomes for people on PHBs but also emphasise that there are a number of issues which need to be ironed out including access to information which will critically affect the degree of choice and control PHB recipients can exercise. A PHB stories DVD has also been launched
Health Secretary Andrew Lansley has said that by 2014 people receiving ongoing NHS healthcare (including those with mental health needs) will be eligible for Personal Health Budgets (PHBs) subject to the results of the ongoing PHB pilot site evaluation which will finish in 2012.
CHALLENGE STIGMA IN BME COMMUNITIES
PowerUp! Is working with BME service users to help them voice their desire for anti stigma programme Time to Change to work in a meaningful way with BME communities. A recent presentation by Government funded anti stigma campaign Time to Change (TTC) Director Sue Baker at a BME Mental Health Summit at National Mind hit a raw nerve by seeming to work tokenistically with BME communities as a tick box exercise to meet funding requirements.
Service user Doreen Joseph, who had been involved in writing a TTC report following some BME focus groups, said she had felt pressured to water down criticisms of TTC. She also drew attention to the fact that TTC’s stated goal of working more with African Caribbean communities through a newly appointed post dedicated to this, could come unstuck given TTC steadfastly refusing to tackle “the real racist oppressive aspects of the mental health system and police detainment” and instead concentrating on what another delegate said was the “soft and fluffy” work of community engagement.
The obvious upset caused by the TTC presenter inflamed the existing disillusionment and anger felt by many BME campaigners and service users at the failure of successive Government backed initiatives like Delivering Race Equality to reduce race inequalities in the mental health system. PowerUp! will be working to help ensure that the voice of BME and other service users is used to help TTC focus on effectively and meaningfully challenging stigma and discrimination.
TRANSGENDER EQUALITY EVENT
The first ever transgender equality action plan will soon be launched. With the Government Equalities Office confirmed to speak, this timely event will raise awareness about the plan and its implications and offer practical guidance of how to address the equality challenges faced by transgender people
Date: 8th December 2011
Time: 10.40am - 3.15pm
Venue: Broadway House, London
This is not a free event but there are some bursaries available. For further information
SEPTEMBER UPDATE
Drawing some of his work together over the last year and a half, PowerUp! Co-ordinator Raza Griffiths is planning a joint conference looking at LGBT personalisation with the Lesbian Gay Bisexual and Transgender Consortium. Information on Conference.
JULY POWERUP! UPDATE
During the summer months PowerUp! Co-ordinator Raza Griffiths has been presenting and facilitating discussions on mental health and wellbeing issues faced by BME, LGBT and other multiply marginalised groups.
ONE IN FOUR CONFERENCE
After chairing the One In Four conference
HAPPY SOUL FESTIVAL
May saw Raza giving an opening address to the first event of the Happy Soul Festival in Charlton south east London attended by 90 people. Happy Soul was a London-wide extravaganza over 13 days that celebration of BME film and arts exploring wellbeing. Raza also co-facilitated some workshops looking at how service users could get their voice heard in the media at the Oxleas Health Festival organised by the Social Inclusion Unit of Oxleas NHS Foundation Trust. If you are a service user or carer and would be interested in some media skills training, enabling you to effectively, but also safely, talk to the media about your group or mental health issue, then do contact Raza.
JUNE EVENTS
In June Raza gave presentations at two engagements. The first of these was at Together’s Service User Involvement and Peer Support and Development Group, where the meeting, attended by six people, raised level of knowledge on personalisation and some of the issues in its realisation on the ground in the current climate. Some of the participants wanted more information about how to access providers you want to sell a service to e.g. service user leadership courses, what people can do if they are denied a Personal Budget, collating case studies and evidence of issues faced by people wanting to access Budgets in order to help service users lobby and campaign. Raza will shortly be contacting them around these and other issues such as collective purchasing, peer led services and creative support options.
The second event attended by 50 people, was organised by St Mungo’s – the homelessness charity, and looked at issues faced by their clients who also have mental health issues as well as drug and alcohol addictions as well as being homeless. This event looked at particularly at BME recovery and drew on the past work of SPN around recovery as well as SPN Co-Chair Jayasree Kalathil’s study Recovery and Resilience: African, Caribbean and South Asian Women's Narratives
RAZA'S RECOVERY
Raza spoke about his own recovery and also of his personal experiences of being labelled with a diagnosis of bi polar on an inpatient ward and the fear of being stigmatised as being ‘mad’ that had stopped him seeking help early He also spoke about the factors that helped him to recover, such as accessing DOST, a support group for gay, bisexual and questioning men from black and minority ethnic communities DOST (Kiss is a similiar support group for lesbian bisexual and questioning women)KISS
PROGRESS AGAINST PROJECT PLAN
PowerUp! is half way through its second year of funding and the project is due to finish by February 2011. PowerUp! is actively looking for funding to enable PowerUp! to continue and would be interested to explore collaborative future bids with other partners, so do email Raza if you have any ideas.
Raza has made good progress in terms of awareness raising around personalisation and Personal Budgets amongst BME and LGBT communities in London although given Raza only works 2.5 days there continues to be a need for work to raise understanding of eligibility and how to get a Budget and what it can be used on, This despite the Government’s push to get greater numbers of people on Personal Budgets. We need to continue to ensure people are fully clued up so that they are not just put on a Personal Budget at conversion reviews without any real awareness of the options (as arguably happens all too often).
The parts of the Plan Raza will especially be focusing on in the future – for example, at the planned follow-on to the One In Four conference - is around helping service users to lobby commissioners and providers for more relevant and personalised services particularly by developing a good business plan and developing longer term good relationships which enable them to influence services. Raza has already identified some good practice examples of this but would love to hear from you if you’d like to share more and possibly speak at the future conference. Raza would also like to hear from you if you are a service provider or service user involved in co producing services.
He would also like to offer service user and carer groups and Trusts the opportunity to receive media skills training so that service users and carers can promote their chosen messages and views around mental health through the media. For all enquiries please email raza.griffiths@scie.org.uk
The Challenges of the Big Society
Conference debates challenges and opportunities for mental health
£3M to develop User Led Organisations
Office for Disability Issues announces funding for sustainable ULOs
WE WANT TO HEAR FROM YOU ABOUT THE IMPACT OF THE CUTS
SPN is inviting members to write in about the impact of the cuts on mental health in particular. Recently we got this email from an SPN member in Richmond and Kingston borough about the closure of a BME day centre:
Dear SPN,
Yes the Oremi Centre which is an Black Mental Health day-care service and has been around since 1997 serving the community of Ladbroke Grove area W10 : West London: Kensington and Chelsea has to decided to cut us loose from under the wings of Social Services and put us out to tendering whereby they should inform us by April 2011 who our new employers are, from either the private or voluntary sector.
It’s ridiculous as we have been a successful service for 13 years, and have helped the borough to obtain their stars in terms of engaging with the BME community.
Kind regards
Name and address supplied
You might also be interested in The Guardian webpage looking at the impact of the cuts across health and social care, including mental health. The paper is appealing for volunteers as part of its ongoing “cuts watch” project"
CAMPAIGNS AGAINST THE CUTS
March saw the March Against the Cuts protest in London attended by an estimated 250 000, including PowerUp! Co-ordinator Raza Griffiths and SPN newsletter writer Kate Summerside who were there as observers. Whilst PowerUp! is not a political organisation, we cannot skirt round the fact that the cuts are having major implications for the vision of personalisation across all four aspects of personalisation (in terms of social inclusion, universal services, choice and control and early intervention and prevention – want to learn more about these intertwined aspects of personalisation? – see Raza’s powerpoint presentation on personalisation see slide 5.
Future events related to protesting against the cuts and making one’s voice heard include:
The Hardest Hit Campaign which includes mental health charities and aims to send a clear message to the Government to stop the cuts through a march in London on 11 May and online lobbying.
The 38 Degrees campaign encourages people power through asking them to undertake actions such as writing to an MP or hosting a rally to lobby MPs against the cuts. Here is a link explaining how you can lobby your MP
RECENT REPORTS ON THE IMPACT OF THE CUTS
The Commission Into The Funding of Care and Support has been looking at the long term future of the care and support system and stresses its commitment to furthering personalisation. Whilst its Call For Evidence finished in January, it still welcomes contributions, before it announces its recommendations in July 2011. You can email but first do read the summaries and reports at the bottom of this link
False Economy report by UNISON which examines the direct and indirect implications of the insecure funding regime faced by the social care sector, with a particular focus on those relating to employment and service quality
Benefitting Disabled People report by the Disability Benefits Consortium shows how welfare reform changes may hit disabled people the hardest including people with mental health needs, especially vital benefits like Employment and Support Allowance (ESA; 2) and Disability Living Allowance (DLA; 3) on thousands of disabled people and their families
POWER UP! PARTICIPATES IN BME SERVICE USER INVOLVEMENT AND PERSONALISATION EVENT IN WANDSWORTH
PowerUp! Co-ordinator Raza Griffiths and PowerUp! advisory group member Amber Chidakashi presented at an event co-organised by anti stigma programme Open Up, South West London and St George’s Mental Health NHS Trust, The Asian Health Agency and PowerUp! 70 people came to the event including a range of stakeholders from or working with BME communities. The seminar looked at opportunities and barriers to BME service user involvement in the governance of Trusts and other ways of influencing the local health and social care agendas, information sharing and networking of a range of local stakeholders and barriers and opportunities for BME communities to benefit from the mental health personalisation agenda. Of the 23 evaluations handed in, 22 said the talk had improved their knowledge of personalisation, 9 said it had improved their knowledge “very much”, 8 said it had improved it “quite a lot” and 3 said they were already quite well informed. In terms of issues people wanted to explore further, people said they wanted to know more about restrictions on accessing a Personal Budget, supporting people to identify their needs and aspirations and communicate these to the community for specific service development where needed, better linking of local projects into one central point and learning from other projects across the country and how to access funding for carers. Several projects asked Raza to talk at their premises and Raza is hoping to arrange this in the near future. Here is a link to Raza's presentation
SUPPORTING PARENTS OF GAY ASIANS
PowerUp! Co-ordinator Raza Griffiths facilitated a discussion and arranged for the mother of a gay Asian man to speak about her experiences as a parent to the Dost support group for gay Asians and people from Muslim communities link to info on Dost. 11 participants found the discussion very helpful and five found it quite helpful. The discussion focused on issues around being gay and relating to parents, and particularly to setting up a support group for parents of gay people from Muslim and South Asian backgrounds as a result of an earlier discussion where this had been identified as a gap in services and support.
Many people pointed out that they were not out and that therefore thinking about setting up a support group helping to meet the needs of their parents was not really on their own agenda at present. What they found useful in the talk was hearing about the issues from a mother's point of view and of how other gay people from south Asian backgrounds relate to their parents. People in their evaluations wrote how inspiring it was to meet a mother who was accepting of her gay son. Other people talked about the need to challenge the lack of visibility and positive role models in the South Asian media around being gay. Raza drew a parallel with other stigmatised groups, such as people with mental health problems, and said that increasing visibility had to be done by gay South Asians themselves. It was possible but would obviously be difficult to begin with. Having himself written on and been the subject of media coverage on being gay and Asian, Raza offered to advise anyone thinking of doing this of the pros and cons.
However, the main point of the meeting, despite the fact that many of the people who were out to their parents were not able to come, was that people present felt that setting up a support group would be a good thing for parents and could have a knock on positive effect on gay children too, since they were more likely to be understood if their parents had access to support. The lack of positive information and the continuing social stigma attached to being gay within Muslim and south Asian communities prevented children from coming out. It was not only children who feared rejection due to being gay however; for parents, too, having a son come out as gay could be a bewildering experience and there was also the burden of negative community reactions to deal with. This could leave parents, as well as children, feeling alone and isolated. Any new group would aim to help counteract this isolation by providing parents of gay children with a safe space where they could socialise, draw strength from each other and perhaps have opportunities to receive information and discuss some of the issues they were facing. People advised that informal socialisation rather than going in at the deep end about gay issues was best until parents felt more at ease in the group and trusting enough to bring up the subject of their gay children themselves. In this respect, Raza talked a little about the example of a Gujarati speaking group in Harrow that looks at mental health issues. But it did not begin by talking about mental health, as the mental health label might have put many people off due to the severe stigma around mental distress in their community.
The mother with the gay Asian child pointed out that there is already an existing support group for parent called FFLAG (Friends and Families of Lesbians and Gays) where a small number of Asian parents already go, and signposting parents to this group could be an alternative to setting up a new group. She was involved with this group in its early days, and pointed out that the reactions of parents from non Muslim or south Asian backgrounds was not that dissimilar from the reactions we heard of parents from Muslim and south Asian backgrounds.
The next step in terms of the support group for parents would be to organise another meeting for those interested, in which more parents came. The invitation should also be sent out to parents of lesbians from Asian backgrounds, and Raza will shortly be contacting Kiss (a support group for lesbians from south Asian backgrounds) in this respect.
Some of the questions which might be posed at a future meeting with more parents might be:
1. are there/what are the support needs of Muslim and South Asian parents?
2. what would such a group provide? Would it be similiar to DOST with regular face to face meetings in a set venue?
3. Who would facilitate and help run such a group?
4. where and how often would it meet? (Asif the Dost Co-ordinator pointed out that NAZ could provide a room for it to meet but not facilitators)
5. would it need funding?
LGBT and BME NEWS ON PERSONALISATION
This SCIE webpage has a good overall summary of the implications of the Equality Act for a range of people
Afiya and Race On The Agenda say that the Healthy Living White Paper talks of fairness but does not adequately address how to create a level playing field and tackle the structural factors and ingrained inequalities including those affecting mental health of BME communities
A Social Care Institute for Excellence (SCIE) film Making Personalisation Happen for BME communities looks at how BME organisations are in a unique position to help people from BME communities to benefit from personalisation. At the bottom right of the page are links to a host of other SCIE resources on personalisation.
PERSONALISED NEEDS AND ASPIRATIONS OF SERVICE USERS IN GREENWICH
As part of his PowerUp! Co-ordinator role, Raza gave a presentation on personalisation at the Greenwich Metro Centre, which offers a range of services to LGBT people. It was he admitted a difficult time for the much promoted claim of giving people greater choice and control, given that many services in the borough – from libraries to back to employment and job seeking help and mental health agencies were being cut. However, Raza then facilitated a discussion on peoples’ interests and what kept them positive and well, getting them to think about how they could develop them further. 12 people gave evaluation forms in. All said the talk had improved their understanding of personalisation, 7 saying the talk had improved their knowledge “very much”, 3 saying “quite a lot” and 2 saying “a little”.
On the feedback forms, amongst the issues people wanted to know more about were: making music, computing, IT, setting up an internet radio station, what effect going into full time study has on benefits, accessing more information about personalisation and Personal Budgets, building a website and tutoring to make a living from artwork.
As a result of the feedback, Raza has offered a further session about Personal Budgets in particular - who is entitled to one, how do those people who are entitled get one, what have others used it for, how did they manage the financial side of the budget and so forth. Whilst it is certainly something that it would be good to be more aware about, Raza did caution that perhaps not everyone in the group might be eligible for a Budget. He also sent a link from Greenwich Council's website There are more links down the left hand side of the page.
In terms of the very important issues around how benefits can be affected by going into full time study, he sent this link for starters - from this webpage click on the relevant link e.g. – part- time students, full time students on disabilities and illnesses etc.
Re: setting up an internet radio station, Raza passed on the contact details of Woking Mind, which had organised some training for its service user group in using an editing suite at a local internet radio station called Radio Wey to broadcast a one hour radio slot a couple of years ago on mental health stigma. They have been very active in contributing to various programmes on mainstream radio including a Radio 4 series called States of Mind which looked at changing perceptions of mental health in this country through history - here's a link with a little bit of info about the broadcast and more here
Re: making a living from artwork, Raza emailed the person who wanted more information but just in case anyone else wants to do this, here is a link
Re: making music, Raza sent the contact details of mental health service user group Sound Minds in Battersea - they've produced a few CDs too so might have some handy hints/provide inspiration/provide like-minded people to hang out with?
POWER UP! ASKS LONDON SERVICE USERS THEIR VIEWS ON PERSONAL BUDGETS
Co-facilitated a focus group on service users’ understanding of Personal Health Budgets attended by with Jayasree Kalathil. The focus group was one of six undertaken across the country. The report is currently confidential and no further details can be released until it is made public. As soon as this happens, we will put it up on the SPN website.
POWER UP! UPDATE MARCH 2011
PowerUp! co-facilitated successful personalisation events across London, and submitted our interim report to our funders, to the increasingly tough background of cuts. See here for further details about the March Against the Cuts event in London on Saturday 26 March.
PERSONAL HEALTH BUDGETS FOCUS GROUP FOR BLACK MINORITY ETHNIC COMMUNITIES
On 1 March PowerUp! Co-ordinator Raza Griffiths co-facilitated a consultation on Personal Health Budgets and mental health with people from black and minority ethnic communities in London. PHBs (not to be confused with social care Personal Budgets which have been available for some time) are currently across the country and will eventually be available through the NHS for people with mental health and other conditions. The consultation looked at peoples' level of understanding of Personal Health Budgets, what people would like to use it on and some of the potential obstacles they foresaw. Report out later this year. The consultation was hugely oversubscribed highlighting the interest in Personal Health Budgets. If you have experience of mental distress, live in London and are interested to explore some of the issues around Personal Health Budgets or any other ways that service users can have more choice and control e.g. social care Personal Budgets and peer support, then simply get in touch with Raza by emailing him Raza
POWERUP! INTERIM REPORT
During the last year PowerUp! has been busy documenting some of the challenges and opportunities for the personalisation agenda for black and minority ethnic and lesbian gay bisexual and transgender communities. See our interim report to our funders for an overview.
UPCOMING ENGAGEMENTS
These include a talk with lesbian gay bisexual and transgender service at The Metro Centre in Greenwich. More info to follow
POWER UP! WANTS TO HEAR FROM YOU
PowerUp! would like to hear from any Londoner who is interested in the mental health personalisation agenda – as a service user, carer, worker, commissioner or campaigner, particularly those from or working with black and minority ethnic, and lesbian gay bisexual and transgender communities. Email PowerUp! Co-ordinator, Raza Griffiths for more information.
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