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March 2016 Quarterly Meeting notes

Date: 7th March 2016 (Monday)
Time: 10:00 - 13:00
Venue: Paddington Arts (Pyramid Room)32 Woodfield Road, London, W9 2BE [MAP]
Theme: Stigma and how it stops communities accessing appropriate services
AGENDA: Download HERE docx 
Notes: Download below QM notes HERE docx
INFO: This meeting's theme was about stigma and how it contributes to inequalities and stops people accessing services. We heard presentations discussing stigma in many different contexts from mental health and sexual health to the stigma surrounding disabilities, gender transitioning and dying. Finally, participants had the opportunity to feed their own views on stigma and how it contributes to inequality and what we can do to change that.
This meeting was of use to anyone interested in reducing stigma in any given field or just interested to find out more about the different services that are available.


Mental health: a daily habit like brushing our teeth? - Like Minded strategy pptx
Stigma and End of Life Care - St John's Hospice pptx
Full of Life Together pptx
Kwa Africa - Reducing HIV Stigma pptx

Eddie Chan, BME Health Forum Chair, welcomed all to the meeting and introduced the first item.

Item 1: 
Lucy Smith, NHS North West London Collaboration of CCGs, Workstream Lead, Like Minded and Emer O’Neill will present ‘Mental Health: A daily habit like brushing our teeth?’

[Download the power point slides at this LINK]

Like Minded is a new strategy, led by NW London collaboration of CCGs, for establishing excellent, integrated mental health services to improve mental and physical health.

Services are in place and available but this does not mean they are necessarily accessible.

According to estimates of people living with common mental health conditions about 1/3 are being treated – at a guess this would mean (over the areas covered by NW London Collaboration of CCGs) that’s about 250,000 people walking around with mental health issues but are not getting help with it.

So what can we do about this collectively?

Access to talking therapies for BME groups is generally good (without differentiating between specific groups). In the Three boroughs (Westminster, K&C and Hammersmith & Fulham) there has been particularly good access, due most probably to the good work being done by local BME organisations around mental health – however recovery rates are not quite as good as they could be.

A lot of good work has been going on but what more can we do?

Join Time to Change campaign (Time to Change is England's biggest programme to challenge mental health stigma and discrimination.)
  • Become a mental health champion
  • Share your story
  • Get involved in your workplace
  • Run an event
Mental health and how we perceive it has come a long way. We are much better at thinking of Mental health as something that is part of all our lives and less ‘us and them’. The Time to Change campaign has been instrumental in this. In some councils we also have a Mental Health councillor/ representative.

Digital Mental Wellbeing Project - community groups, voluntary sector, faith groups, digital experts, employers, working age Londoners are all invited to take part in one of the biggest digital mental wellbeing projects in London. For more information please email: 

‘Man Down: Stand Up!’ - Innovation Lab - 6.30-8.30pm, Thursday, 24 March
Stand up comedy, conversations and explorations of men’s emotional health and wellbeing as part of Like Minded. How can we encourage men to seek help? What do they prefer doing to support emotional health? How can our services be more ‘man friendly’? 
Venue: Questors Theatre, 12 Mattock Lane, Ealing, London, W5 5BQ (nearest tube – Ealing Broadway)
Book on Eventbrite: https://innovation-lab-24-march.eventb


Question: For any of the statistics on access for BMEs- do you see differences between specific BME groups?
Answer: We haven’t looked at the specific stats for this but the data is there and we can look at this.

Question/ comment: one of things you said is that ethnic minorities access IAPT services quite well. But what do you mean exactly? What about those with whom English is not their first language or new arrivals (asylum seekers and refugees). I think we definitely need to look more specifically which BME groups are not accessing counselling services who may in fact need them the most.

Item 2: Steve Barnes from St John’s Hospice will talk about the services they offer to terminally ill patients and their families

[Download the power point slides at this LINK]

The last time St John’s Hospice was at the Forum meeting we were discussing the End of Life JSNA and today I want to talk about what has been done subsequently and also how the absence of being able to engage with our services impacts on access, and finally the campaign – Dying Matters.

About St John’s Hospice:
St John's Hospice works in partnership with health and social care providers to provide specialist palliative and end of life care for people with progressive and life-threatening conditions.
The majority of people referred are cancer patients, however services are open to people with a number of life threatening conditions such as HIV/AIDS, chronic heart failure, respiratory disease and long-term neurological conditions such as motor neurone disease, multiple sclerosis and Parkinson's disease. In fact 40% of people currently in our day service are people with HIV/ AIDS.

5 main service areas:
  1. Inpatient unit – 18 beds available – people brought in for symptom control 
  2. Day service
  3. Community Support
  4. Hospice@Home – offers up to 24h a day care in a patient’s own home
  5. Lymphoedema Services
Additionally, people get access to a wide range of therapies.

Stigma and end of life care
  • Stigma is bound up with identity.
  • People not wanting to talk about their condition
  • How do we open up communication so people can begin to ask for help can be a difficult step
Factors impacting on BMEs accessing care
[Image taken from St John’s Hospice power point presentation]

Attitudes to palliative care – that it is for those who have no one else to look after them – shame

Mistrust and Dissatisfaction with health care– BME groups less likely to have satisfaction from health services in general – this mistrust naturally moves across to this type of service.

Awareness – most BME groups tend to be less aware of specialist services
Ethno- centralism – Hospice movement is traditionally a white middle class movement

As we face an increasingly aging population we are looking at a proportionally much greater need amongst BME communities than are currently taking up these services.
[Image taken from St John hospice presentation slide]

Dying Matters – Aims to raise public awareness about the importance of talking more openly about dying, death and bereavement and of planning ahead. (For more information].

Next Steps:
We are very keen that we are accessed in a proportional way. We are also able to come to you. We conduct patient feedback ‘What matters to me’ -  opportunity for patients to highlight anything of importance or concern to them.

Item 3: Sue Redmond from Full of Life will talk about the services they offer to children with disabilities and their families

[Download the power point slides at this LINK]

Full of life is a parent managed organisation. Everyone has come from support groups. We support around 500 families from those with newly diagnosed little ones to 90 year old parents.

Job description (of parent with child with a disability):
  • Ability to function with no sleep or interrupted sleep
  • Ability to think straight under extreme stress
  • Ability to listen to repetitive music or words
  • Ability to have a plan B for most situations
  • Ability to negotiate their way out of potentially dangerous, unpredictable and violent situations
  • Ability to deal with chronic medical conditions
  • Ability to retain precise information in life threatening situations.

Parent carers are invisible. When children are diagnosed it is often kept under wraps. Parents are given a diagnosis and often not told what it will mean and where they can go. 

What tends to happen at Full of Life is that parents refer other parents.

It is a very traumatic time (after diagnosis) There is fear within the family – they ask themselves whose fault it is and what they can do to make things better. At Full of Life we often advise parents not to go on to the internet - we don’t want parents to worry more than the already do, the internet gives so much information it can be overwhelming, especially for parents with a newly diagnosed child whose child may not have the levels of disability described on the internet. We also advise them to try and stay in the present - to try to not worry too far ahead.

Parents – Professionals
  • Can feel intimidated
  • Can feel judged
  • Being seen as a bad person
  • Asking for too much
Being a parent of a child with a disability is a lifelong role.

Health Impacts of parent carers:
  • 83% of parent carers say caring interferes with their own, even basic healthcare
  • Parent carers report they have no time to make appointments with Doctors. 
  • Often have to cancel due to unpredictability of full time caring responsibilities. 
  • If parent carers do have treatment, they have no time to heal.
In the last 8 weeks we have had 3 parent carers diagnosed with cancer (2 breast and 1 with bowel cancer)

Emotional wellbeing: No one considers PTSD for parents with children with disabilities.

Disability Hate Crimes - Our parents and children, young people and staff face abuse from:
  • Neighbours
  • Other parents in schools
  • Random strangers 
  • Building sites
  • Police reported 100 incidents in London 2013

Best information for parents still comes from other mums and dads.

Item 4: Sabah Choudrey from Gendered Intelligence will talk about gender and transitioning

Sabah is a trans youth worker (under 25’s) from Gendered Intelligence. He is also a private trans consultant.

For BME trans people knowledge is power. How can we challenge stigma. There is a conception that being trans is something that has come from western secular countries. However trans people are Muslim, they are Jewish, Christian and Hindu. In some of these traditions the idea of gender as fluid is an age old concept.

So where does the stigma amongst these communities come from? One could argue it originates from the colonisation of these cultures by western traditions.

What does being Trans mean?

For me what did it mean? I was born and given an identity – then this identity began to feel that it fit less and less with me.

Language: We are always going to get it wrong before we get it right.

Why do trans people need to come out at all?

Society has expectations – our families, our parents consider us to be a certain way. It is about understanding what the default is and then challenging it. We need to come out because we are threatened. No one is born trans-phobic - or racist. We learn this and we need to unlearn it. Keeping silent about it is condoning it. If we could just start small in one place it would be a beginning. Even just saying that Muslims are trans phobic we are failing our children by being silent. One oppression upon another oppression is overwhelming.

3 things we could all do to begin to change things:
  • Start the conversation – trans BME people are historically left out of this conversation
  • Continue that conversation – do not tokenise us – contact us – don’t stay silent
  • Challenge yourself and challenge others e.g You feel defensive? Why are you feeling defensive? “Trans people are wrong.” Challenge yourself – Why do you think Trans people are wrong?

Question: Could you tell us a bit about what local charities could do to support trans people?
Answer: Partnership work? A room to support us facilitate a meeting – this is a good way for communities to show we are part of their community.

Question: Are you a National organisation?
Answer: Gendered Intelligence has 6 youth groups in the UK- 1 in Bristol, 1 in Leeds and 4 in London. We also do mentoring in schools and those in further education.

Question: I work for Prostate Cancer UK and we are considered a man’s charity. How could we reach out to the Trans community?
Answer: This is good question. Spectrum, an LGBT organisation are also a good organisation to reach out to. 

Leaflet design that uses de-gendered language would be useful.

Item 5: Dr Helen Sinclair, clinical psychologist and IAPT Long Term Condition lead will talk about the physical aspects of psychological problems
Item 6: Mary Mosinghi from Kwa Africa will talk about reducing stigma in HIV Prevention and Support 

[Download the power point slides at this LINK]

Kwa Africa means For Africa. We operate in the Tri-borough and Wandsworth. We support the empowerment of people living with HIV and AIDS.

Reducing Stigma – The impact of stigma for people living with HIV and AIDS refers to prejudice and abuse.

The key affected populations – are men who have sex with men (MSM) and those from Sub Saharan Africa.

Almost 1 in every 100 are estimated to be living with HIV/ AIDS but almost 1 in every 56 black

African men and 1 in every 22 black African women are estimated to be living with it – and they present late.

There is a need for extended and scaled up HIV testing across the UK to reduce undiagnosed infection and late diagnosis.

Why is there stigma against HIV/AIDS?

In the early 1990’s HIV meant death – and there was a very high death rate.

Disclosure and shame

There were also issues around mother to child transmission.

Today HIV is a chronic manageable condition – and there is a reduction to child transmission from the mother. So there have been big changes BUT stigma around HIV and AIDS is still high and there are still high rates of late presentation.

Because HIV is transmitted though sex it is still taboo among many cultures – as it implies infidelity.

There is not enough info around how HIV is transmitted.

Forms of HIV stigma and discrimination
  • People feel that if they disclose their condition there will be a negative response.
  • People have been detained at the airport in the US until 2 years ago – they had to disclose on arrival.
  • Healthcare stigma – because of stigma in healthcare people do not want to access services or don’t tell.
  • Employment stigma
  • Community and household stigma
Consequences – Shunned by family and friends

How to challenge Stigma?We get HIV positive people involved in the delivery and shaping of our services

Prevention and support services
  • Community outreach and one to one interventions – The Love Safely Partnership
  • Trained, informed and dedicated community champions raise awareness of HIV/AIDS, give information, encourage early and repeat testing, signpost to relevant services 
  • We offer health workshops in targeted sites e.g Barber shops or community centres
  • One to one support – culturally sensitive
  • Work with individuals to explore ways of achieving an increased feeling of wellbeing through positive lifestyle choices
African Sexual Health Network – support group
This used to be only for HIV positive people but it is inclusive to families of those affected to open up the discussion and raise awareness.

We also work with faith leaders and encourage them to talk to their congregations about it.
In this country there is still a big issue around late diagnosis.

Question: African communities tend to be a little less willing to talk about prostate cancer because of link with sex. We (at Prostate Cancer UK) have also tried to work with faith groups  - can you speak about how you managed to do this.
Answer: We have worked successfully with Evangelists – maybe not the actual pastiors. What has worked when working with barbers at hair salons is offering accredited training to give them incentives. Also the sessions in the barber shops can generate new customers - also giving out free condoms.

Question: Regarding HIV discrimination at work- having HIV is automatically covered in the equality act and also carers are covered. Law is on your side.

Answer: Yes – it is true but education also has to be in place in the work place.

Item 7: Workshop: Stigma and Inequality

What are you doing to resolve stigma?

Table 1:
  • Support services
  • Educating service users
  • Educate community
  • GP Training (H&F CCG)
  • CCG workshops with stakeholders
  • Grants for community and voluntary around inequalities
  • RBKC Learning disability team (partnership work with ChelWest Hospital) Awareness training sessions
  • Dialogue between providers and voluntary groups. Partnership working.

Table 2:
  • Talking
  • Language change
  • Bold & direct
  • Time 2 change – big budget using media differently
  • Carers! Awareness sessions – giving advice/ information
  • Changing perceptions
  • Dedicated EDI group (equality and diversity inclusion)
  • Mandatory training (Equality and diversity)
  • Training at all levels
  • Workshops for local BME (African group)
  • Mentoring and counselling – families for Somali groups
  • PTST- information and making it easily accessible e.g Westminster
  • GP practices training on awareness raising for LP/ MH/ Homelessness

Table 3:
  • Open Age – partnership work, getting involved with national campaigns
  • Conversations and awareness
  • Westminster Forum – gathering information and making links
  • Rainbow club – open doors/ space for people to gather – reduce isolation and not feel judged
  • Breaking down myths in terms of physical health too (e.g being bigger is better  Diabetes)  barriers such as learning difficulties
  • Libraries – many events 

Table 4:
  • Implementing the equality act
  • Accessing services in non-clinical setting (if possible) ie. IAPT services
  • Provision of independent advocacy to be supported
  • Physical engagement of patients i.e those with long term health conditions
  • Training and guidance for organisations
  • Raising awareness
  • User led feedback on services (so not being judged on using the services)
What else do you think needs to be done?

Table 1:
  • Funding – invest more in front line
  • More targeted spending
  • More positive role models
  • Quality of workforce- not properly trained or qualified
  • Use more community networks e.g ‘barber [shop] example’
  • National to local policy
  • Align with national but tailor to “grassroots”
  • More long term commitment
  • Closer community, voluntary, charity and healthcare working

Table 2:
  • Pledge e.g Dementia friends talk to 3 people and pass it on!
  • Schools
  • Tsar – MP’s- local counsellore
  • Managing recovery – ono going issues
  • Media: challenging effectively
  • Using positive role models
  • Encourage members of BME communities to ensure their voices are heard e.g completing national cancer patient experience survey.

Table 3:
  • Biggest Stigma – sexual health/ substance misuse
  • Staff attitudes “Don’t want to depress people”
  • Stigmas around being older and sexually active
  • Fear and attitudes of whole communities – not just individuals
  • Still further to go with ‘normalising’ these issues – small steps and ways in
  • Embed it in our existing services and programmes  safe environment
  • More training. E.g First Aid Mental Health
  • Community forums – get communities themselves involved with how to reduce stigma, not just being imposed from above

Table 4:
  • Diversity info on monitoring forms need to be able to give more options
  • Valuing what already happening, looking at our strengths and building on this
  • Individual change
  • Need to show the benefit of reducing stigma – make it personal and ownership lost in translation.
  • Services need to reflect this in their messages
  • The gap is getting larger even with the issue of stigma – who can shout the largest, those that are not being heard
  • Access to support group in your local area – signposting and info
  • Local stats on who is and who is not accessing services- available to all