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People with learning disabilities are either hidden or visible - my lessons learnt so far

I'm getting some useful insights into engaging communities who are sometimes ignored as I reach the halfway point in my piece of work to identify the barriers which those with learning disabilities from minority communities face in accessing Annual Health Checks (AHCs) at their GP surgery.

You can read the background to this piece of work MVDA has been commissioned to do on behalf of NHS England here: Changing the poor take-up of annual health checks by minority communities

There are several lessons to be learned which are outlined below, but the most important one for me has been to approach engagement with groups, VCOs and community leaders on topics such as this with a completely open mind. It is important to understand their different perspectives and to value contradicting views.

Dependent upon where you are in the system, those with learning disabilities are either hidden or visible – it’s as simple as that. If, for example, you are a provider of support to those with learning disabilities then individuals’ experiences of accessing AHC’s are quantifiable and real, whereas if you are a community group supporting ‘minorities’ then potentially those with learning disabilities are limited to the son or daughter of one of those who use your service and AHC’s are not on your radar at all.

To encompass all the views of these people is obviously not clear cut. It is important not to place emphasis upon one opinion over another, but to endeavour to detail all experiences equally, but explaining the context. So, for example, a VCO which supports people with learning disabilities can give a detailed and accurate account of the experiences of users, but this will need to be qualified if the users are not from a minority community.

Lessons learnt for future engagement

This project has identified important fundamentals which need to be reflected in any future engagement activities. Firstly, it became clear that a timetable for a staged approach was necessary. Broadly speaking there were 5 stages:

  1. Initial discussions to discover what understanding the VCO has about the general topic you are wishing to engage with them on e.g., health services and disability
  2. Discussions on the specific area of engagement, but still at a general level e.g., do they understand what is meant by people with learning disabilities, minority communities and Annual Health Checks?
  3. Questions about the visibility of these people in the services provided and the ease to locate them 
  4. Can the VCO provided a conduit to engage with parent/carers (location of those nearest to individuals)
  5. Actual engagement with individuals themselves either directly or through VCO staff

Local views may not reflect national research or traditional thought of views. For example, language appears not to be a barrier in some communities as it is suggested there is at least one English speaker in families who can translate for others.  However, this may not be reflected in other communities and it is dangerous to generalise about language etc.

It is important to differentiate between service provider issues and the barriers which minority communities face. One provider suggested that a barrier to AHCs was that they (the provider) had a lack of personnel to cover this activity. This is possibly a contractual issue which probably needs to be addressed with the commissioning body.

As the project moves into its final stages, which includes a ‘Roundtable’ meeting with Commissioning staff and community groups and leaders, the main lessons will be what needs to be done to ensure those with learning disabilities are supported to access AHC’s, no matter which group they are from.

Craig Duerden

MVDA

In February 2007 Craig joined the Planning & Partnership team with a focus on Health & Social Care.  He left MVDA in 2010 and re-joined us in August 2014 as Strategic Development Officer.  He is currently acting as the partnership manager for both the Middlesbrough Carers Partnership and Middlesbrough Mental Health Partnership as well as leading MVDA’s work around VCS intelligence and supporting the Health and Wellbeing VCS Forum.