Do you want to have more say in health research?

Involvement opportunity – CAPC Patient and Public Involvement and Engagement (PPI&E) members needed in Bristol

Primary Care is healthcare in the community – everything from GPs to Pharmacists, Optometrists to Dentists. The Centre for Academic Primary Care (CAPC) aim to gather evidence to help decide what will make primary care better for everyone.

Since their goal is improving care for everyone, it’s best that everyone is involved.


How to get involved

You can get involved in the research in a number of ways:

  • help select research that is important and relevant
  • help researchers design their projects
  • help develop understandable information sheets for people taking part in research
  • join a research management or advisory group
  • help interpret the results of the research
  • help make sure the research is reported in understandable ways
  • help make sure good research is heard about.

Who: 

People with an interest in healthcare research, public involvement in research. CAPC are looking for people who are passionate about involving patients, carers and the public in primary care research (the first port of call in the healthcare system – for most people a GP).

Experience of a similar role is not needed and any necessary training will be given.

Where: 

Meetings are held either at CAPC (local travel is reimbursed) or somewhere which is convenient for you.

Payment:

CAPC PPI&E contributors are paid £15-20 per hour depending on the tasks required, plus £15 for pre-meeting preparation or paperwork between meetings.

More info: 

Please contact the CAPC PPI&E coordinators, Victoria Wilson and Julie Clayton capc-ppi@bristol.ac.uk 0117 331 4555 University of Bristol, Centre for Academic Primary Care, Canynge Hall, Whatley Road, Clifton, Bristol, BS8 2PS

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Next Stage disabled musicians survey

Picture of band 'Holy Moly and the crackers'

Are you a musician, artist or DJ producing original music, with the ambition to focus on your creativity and take your project forward?

Do you personally identify as a Deaf or disabled person, or don’t identify, but have a health condition or impairment that impacts your daily life?

If the answer to these two questions is “yes”, then this is your opportunity to share your experiences andchange the music industry.

The survey gives you the chance to share your music with Attitude is Everything, join a new artist network, and share your experiences of:


 Rehearsing
 Recording
 Playing live
 Seeking support and funding
 Networking and engaging with the music industry
 Talking about your lived experience as a musician or artist

It should take around 5-10 minutes to complete this survey, if you want to take a break you can save your answers and come back to it later.

The findings of this survey will be shared at The Great Escape in May 2019.

Complete the Next Stage Artist Survey here

If you require this survey in an alternative format, or need guidance on how to complete it, please contact rich@attitudeiseverything.org.uk.

**Survey closes March 10**

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Check out these books by or about Deaf and Disabled people on World Book Day!

Deaf and Disabled people are often not well represented in literature. Earlier this year, the Merton Centre for Independent Living made an effort ahead of World Book Day to crowd-source a list of books by or about Deaf and Disabled people.

Check out the list their members and supporters came up with here.

Are there any books you think should be added to the list? You can send your suggestions to info@mertoncil.org.uk or tweet them @MertonCIL

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Disability News Service News Feb 28 2019

Government announces plans for extension of personal health budgets

The government wants to increase the number of people who use personal health budgets (PHBs) to choose their own health and social care support from 40,000 to as many as 200,000 over the next five years.

It has approved extending legal rights to PHBs to disabled people eligible for funding from NHS wheelchair services, and those eligible for aftercare services under section 117 of the Mental Health Act.

But it also signalled that these rights would eventually be extended to other groups, including people with ongoing social care needs who also make regular and continuing use of particular NHS services; people leaving the armed services who are eligible for ongoing NHS services; and autistic people and those with learning difficulties who are eligible for ongoing NHS care.

Read the full article here.

Katherine Araniello: Tributes to ‘force of nature’ and ‘creative genius’

Disabled artists and activists are mourning the death of Katherine Araniello, a “force of nature” who leaves behind a “hugely significant” disability arts legacy.

Araniello was a performance and video artist who used satire and subversive humour at the expense of “dehumanising and patronising” targets such as disability charities, the Paralympics and media representation of disabled people.

Tony Heaton, chair and former chief executive of Shape Arts, said Araniello was “an original and independent thinker” with a “wicked sense of humour and irony”, and her death was a “huge and devastating loss”. 

Read the full article here.

Concerns over growing number of ‘dangerous and discriminatory’ road layouts

Increasing numbers of local authorities are breaching the Equality Act by designing “dangerous and discriminatory” road layouts that put blind and partially-sighted people at risk of serious harm, say disabled campaigners.

The concerns have been raised by the user-led campaign group National Federation of the Blind of the UK (NFB UK), which has grown increasingly concerned by schemes being introduced across the country.

Among those councils it has highlighted are Manchester City Council, Leicester City Council, and Enfield council in north London.

Read the full article here.

Government is failing on disabled women’s rights, UN is told

Activists have told a UN committee how the UK government is failing to address the significant barriers and human rights violations faced by disabled women in accessing social security, justice, jobs and health services.

Eleanor Lisney and Rachel O’Brien, from the disabled women’s collective Sisters of Frida, were among UK women’s rights campaigners in Geneva this week to brief a UN committee of women’s rights experts.

The committee was examining the UK on its progress in implementing the Convention on the Elimination of all Forms of Discrimination Against Women (CEDAW).

Read the full article here.

DWP failed for years to meet legal duties on accessible information, says judge

he Department for Work and Pensions (DWP) failed for years to comply with its legal duties under the Equality Act by refusing to provide an accessible way for many disabled people to communicate with its staff about their benefits, a judge has ruled.

Judge Jeremy Johnson said in a high court ruling that DWP’s “systemic” failings pre-dated the Equality Act, which became law in 2010, and meant that some disabled people had been deprived of “essential” benefits.

His written judgment also revealed that DWP admitted that its creaking IT systems that deal with employment and support allowance (ESA) claims were not fit for purpose but that it was not worth spending £750,000 updating them because of the continuing roll out of universal credit, which has a new IT system.

Read the full article here.

Discrimination faced by disabled DWP staff leaps by half in four years

The proportion of Department for Work and Pensions (DWP) staff who say they have been victims of disability discrimination at work in the previous 12 months has risen by about 50 per cent in just four years, Civil Service figures have revealed.

The annual Civil Service People Survey shows the number of DWP staff saying they had personally experienced disability discrimination at work in the past 12 months rose by 150 (more than 10 per cent), from 1,462 in 2017 to 1,612 in 2018.

And the proportion of all DWP staff reporting disability discrimination rose by about 12 per cent, from about 2.55 per cent of all employees in 2017 to about 2.85 per cent in the 2018 survey.

Read the full article here.

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Make the Bristol and Bath Railway Path Accessible for All

Cyclist riding through Bristol and Bath Railway Path Tunnel

As part of their ‘One Path Initiative‘, Sustrans are working local communities and the Councils of Bath and North East Somerset, South Gloucestershire and Bristol City Council to explore ways in which behaviour on the Bristol and Bath Railway Path (BBRP) could be improved.  

The One Path initiative engages with path users, listen to their concerns, analyse the issues and then work with them to find a solution. Please follow the link below to take part in an online survey to have your say on how you feel the path could be made accessible for all.

Bristol and Bath Railway Path Questionnaire: https://bit.ly/2HPWI1n

For any extra information:

Link to the ‘One Path’ Facebook page

Information on the project: https://www.sustrans.org.uk/onepath

Sign up to the mailing list: http://eepurl.com/gfAoHP

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News from Disability News Service 7th Feb

DPO welcomes ‘ground-breaking partnership’ with elected mayor

A ground-breaking new partnership between disabled people’s organisations (DPOs) and Greater Manchester’s elected mayor could become a “template” for future work with local authorities across the region, according to one leading DPO.

Greater Manchester Coalition of Disabled People (GMCDP) said this week that it believed that Greater Manchester was the first combined authority in the country to establish a formal partnership between DPOs and the elected mayor.

The authority, led by Labour’s Andy Burnham, is now set to approve funding this month which will ensure that the lead of a new disabled people’s panel will be a paid position.

Read the full article here.

New charter aims to put dignity and respect at heart of local services

Disabled campaigners have launched a new charter that aims to persuade organisations – and individuals – in their local area to treat people with dignity and respect.

Ken and Tracy McClymont have spent four years working on the Dudley Dignity Charter, which lists 10 key principles for how people should be treated, focusing on areas such as communication, privacy, choice, control, advocacy and fairness.

The McClymonts, both key figures in Dudley Centre for Inclusive Living (Dudley CIL), have worked on the charter with another local disabled people’s organisation, Disability In Action, with support from Dudley Metropolitan Borough Council and Healthwatch Dudley.

Read the full article here.

‘Ill thought out’ bill needs stronger safeguards, minister told after meeting

The government must introduce “stronger and more effective safeguards” to protect the rights of service-users who face having their freedom restricted by health and care providers, disabled campaigners have told a minister.

Inclusion London wrote to care minister Caroline Dinenage yesterday (Wednesday) about the government’s mental capacity (amendment) bill, which is currently awaiting its Commons report stage.

The letter followed a meeting between Dinenage and representatives of Inclusion London and People First (Self Advocacy) this week, and an open letter to Inclusion London published by the minister last week.

Read the full article here.

Newton forced to apologise after misleading MPs in WOW debate

The minister for disabled people has been forced to apologise to MPs after Disability News Service (DNS) caught her misleading MPs about support for disabled people for the fourth time in less than a year.

The misleading comments by Sarah Newton about disability poverty came in December when she was responding to a House of Commons debate on the impact of eight years of cuts to disability support.

But it was only on Tuesday this week, four days after DNS had drawn the attention of her press officers to her misleading comments, that she sent a letter apologising to MPs.

Read the full article here.

‘Shocking’ PIP death figures ‘show assessment process is unfit for purpose’

About 1,600 working-age disabled people are dying every year after having their claim for disability benefits rejected, the government has been forced to admit.

The Department for Work and Pensions figures (DWP) reveal that 7,990 disabled people who lodged a claim for person independence payment (PIP) in the five years after the new benefit was launched in April 2013 had died within six months of registering their claim, while also having that claim rejected.

These figures mean that more than 130 working-age disabled people a month have been found ineligible for PIP following an initial assessment by government contractors Atos and Capita but were still so unwell that they died soon afterwards*.

Read the full article here.

Inquiry call after ‘fitness for work’ firm ‘admits it has no safeguarding policy’

The government’s “fitness for work” contractor appears to have no written policy on how to protect the safety of people claiming out-of-work disability benefits, despite years of evidence linking the assessment with deaths and serious harm.

Only last week, it emerged that ministers have omitted the Department for Work and Pensions (DWP) from a new cross-government plan aimed at reducing suicides, despite ever-mounting evidence linking such deaths with the work capability assessment (WCA) and social security reforms.

Now a senior executive from Maximus appears to have admitted to a disabled campaigner that the company does not have a safeguarding policy, nearly four years after taking on the WCA contract, although it claims it is in the process of creating one.

Read the full article here.

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Help DPAC’s Research on Social Care

Following on from the Independent Living Strategy Group (ILSG) report* into charging for social care, DPAC would like to find out more about how these charges are affecting people. These charges are sometimes called a ‘personal contribution.’


If this affects you, there is an online survey at:  
https://dpac.uk.net/2019/01/please-help-our-research-on-social-care/

* You do not need to give your name, or address, unless you want to be contacted. *
If you would like to complete the survey in a different way, or want more information please get in touch.

If you would also be happy to speak to the journalist Frances Ryan, could you also email DPAC at: 
mail@dpac.uk.net 

DPAC are also looking for someone who is willing to be in a video about: 

  • The negative impact charging has on getting the care and support they need,
  • Being left in debt by these charges.

The video would be for a separate campaign. If you are interested in being filmed for a video, please contact DPAC: mail@dpac.uk.net 

* The report about charges for social care can be downloaded at: 
https://www.disabilityrightsuk.org/sites/default/files/pdf/Chargingsurveyreport-18Nov2018.pdf

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Help raise money for the Forum

piggy bank surrounded by coins

The People’s Health Lottery (PHL) funding is the only grant we have since the Council stopped funding us, and that PHL money only pays for our new peer support project, Making Change Happen. This means we still need to find funding of around £40,000 if we are to keep working to improve the voice, influence and inclusion of all Deaf and Disabled people in the city.   So, we need your support.

That support could be:

  • Doing a sponsored activity.
  • Volunteering with us if you have fundraising experience.
  • Using our websearch and fundraising when you browse or buy online.
  • Making a regular donation to us.


Just £1 pw week from every member would raise between £10,000 and £13,000 a year!

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Update: Annual General Meeting and Open Forum 11 Dec

We are pleased to invite you to our AGM and Open Forum on Tuesday 11 December, 1pm – 4pm at The Foundation, Triodos Bank, BS1 5AS.
We always combine our AGM with an Open Forum on that year’s theme.  This year it is transport and we are delighted to have secured James White, interim Director of Transport at the West of England Combined Authority (WECA).  James has a very thorough knowledge of the local Joint Strategic Transport Plan.  Given the transport difficulties – whether on foot, bike, by car, bus, train or taxi – Disabled people experience, this is a perfect opportunity to tell him what needs to be done to achieve the accessible transport we need.
On a lighter note, we will then launch our new peer support project ‘- with cake and coffee!
This new project, ‘Making Change Happen’, will set up four groups across the most disadvantaged communities in Bristol so that Disabled people can come together and establish what their needs are and how, as a group, they want to address them.  For some groups, it might be an opportunity to socialise; others may swap information and advice; and others may have particular barriers/issues they want to address within their own community.
The first meet-ups are in January so why not come along and find out where and when they will be, take away a few flyers for other Disabled people and older people with impairments that you know, and sign-up to make sure you get regular updates as the project progresses.
BSL interpreters, PA support and refreshments will all be provided.  Unfortunately we can no longer pay transport costs for every member.  However, if you have need for accessible transport, please contact us with more details and we will do our best to help.
It would be great to see you, so do come along!
If you have any questions or to tell us about your access needs, email bristoldef@gmail.com or call 0117 914 0528
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