Together for a strong, united voice

Together for a strong, united voice

Discussions ran from social care law to speed dating – and the ‘big bosses’ were held to account – at the North West Regional Forum’s first national self-advocacy convention, held alongside its annual advocacy conference. Sue Sharples and Amanda Topps report

You could feel the energy, passion and excitement in the room at the three-day North West Regional Forum’s 16th annual conference in Blackpool on a sunny February day.

This atmosphere was echoed by Mark Warren, director of community health and adult social care at Oldham, who commented on the ‘dedication, motivation and commitment’ of the self-advocates. This year was also the inaugural national self-advocacy convention led by Learning Disability England. Joining the 300 delegates were LDE co-founder Gary Bourlet and its chief executive officer Sam Clarke, who added a national voice alongside the north-west attendees.

Sean Dempsey of Self Advocacy in Salford was presented with the Derek Russell Outstanding Leader’s Award at the conference

This gathering, with advocacy as its main theme, was a reminder that the voices of people with a learning disability need to be at the forefront of debate at local, regional and national levels more than ever.

A member of People First Merseyside said: ‘We are trying to advance to new levels for people with learning disabilities and think outside the box for everyone with disabilities.’ Mark Ashton, from the Salford Listening to People self-advocacy group, talked about new ideas about network circles and ‘bud buses’, where people take a bus journey together so they can be confident when getting to places. Other workshops included the Social Care Green Paper, Sexual Self Advocacy, Health Matters, My Home My Way, Speed Dating and Makaton Sing and Sign.

Delegates enjoy after-work entertainment

The topical Brexit workshop was also very popular. An important workshop, hosted by Merseyside People First, covered Red Flags for Cancer Symptoms; illustrated with a video, this showed that people with learning disabilities were dying too young because cancer was not being diagnosed early enough.

Ray James, NHS England learning disability national director, gave the keynote speech on the NHS 10-year plan, which was followed by some pointed questioning on current health provision, alongside acknowledgement that the Learning Disabilities Mortality Review to review deaths of people with learning disabilities had not gone far enough.

The conference was complemented by a market place with organisations such as Meet-n-Match, a growing dating and friendship agency in the north-west that supports people to not only meet but also learn about keeping safe when dating. Change, Shared Lives Plus, GM Gold, the U-Night Group and Together All are Able were also present and shared information and ideas. ‘It is a time to share what we have been doing and celebrate everything thatÕs good but also to come together and reflect on what’s not great and what we can do to make things better for everybody in the north west and make a positive change,’ said Daniel Hall a self-advocate from Chorley Voice For All.

On the third day, the delegates are traditionally joined by what they call the ‘big bosses’ –  local authority and health commissioners who join the conference for an opportunity to hear how self-advocates want to transform care and support, and to develop local joint action plans for service development. The hot topics this year included better communication with self-advocates, more co-production, support for friends and relationships and innovative ways of people giving feedback to the commissioners about their services, especially when they are not working well.

The conference anthem this year, sung and signed in unison by those present – including the big bosses – was Rise by Jonas Blue, and included the words ‘they can’t hold us down any more’. Delegates certainly rose to the occasion, showing genuine recognition of political and economic barriers to change, while holding the bosses to account Apprentice-style by ranking their plans as either hired or fired.

Blackpool did not disappoint and, away from the hard work of the conference itself, there was a notable gala dinner, with DJ, magician, karaoke and a fun photobooth. Delegates also had a chance to give their views in a Big Brother booth, view the social history exhibition about Calderstones and Brockhall hospitals, watch a video about the latest developments at Calderstones’ cemetery, write on a graffiti wall and add to the 100 Years of Learning Disability Nursing celebratory artwork.

The event, organised by independent consultant Jason Rhodes and Pathways Associates, provided an excellent platform for self-advocates from across the UK to campaign together and speak up to make a difference in the lives of people with learning disabilities, potentially heralding the revival of a national self-advocacy movement. Delegates displayed tiger-like confidence, intensity and advocacy skills.


Key Issues

The three big issues identified by self-advocates at the conference:

  • Meaningful relationships
  • New funding cuts
  • Housing, including a fear of returning to institutions with proposed new-build flat schemes