NHS Long Term Plan Focus Group Report: Barnsley Macular Society - Support Group

The group is organised and run by volunteers, most of whom have macular disease, or know someone who has a macular condition. The group offers support and help in understanding macular disease and coming to terms with sight loss.

What did they do?

They met with the group at one of their meetings with the Regional Manager and the local support worker. There were 12 people at the meeting (one new member). They discussed Healthwatch Barnsley and the work they do briefly, then went on to give a short presentation about the NHS Long Term Plan.

The group were used to asking questions of organisations and they encouraged them to do this throughout the presentation. They placed the main points of the presentation on the wall in large print, after a discussion with the regional manager about the best way to present the information to the group.

The group were also supported by the regional manager and the session support worker.

Conclusion from Barnsley Macular Society 

  • Work with the Department of Transport to improve bus routes to the local hospital and the specialist hospitals, especially for people who live in rural areas.
  • Offer flexible appointments as it is difficult to get to appointments on time when you need support to get to the clinics.
  • Look at providing eye clinics locally (in GP surgeries)
  • Look at the support mechanisms, especially for newly diagnosed patients
  • Increase support for people who are at risk of depression & anxiety.
  • Have an Eye Clinic Liaison Officer and a Macular Specialist nurse in every eye clinic. Also a trained councillor.
  • Provision and advice of suitable leisure activities for patients, to avoid loneliness and depression
  • Provide awareness raising training for staff.
  • Make improvements in technology, relevant to this community
  • The CCG to look at their local hospital and speak

Downloads

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