Useful Information
Support Group
A Support Group for people affected by MND meets regularly at the Age Concern Bradbury Centre, Stockton Road, Sunderland.
National Service Framework?
What's all that about?
Glynis Atherton, Director of Regional Development at MND Association,
has explained it to the Branch. She spoke about the National Service Framework
(NSF) for Long Term Conditions, a 10-year Government initiative to drive
up standards of care for people with neurological conditions, which was
published in March and given a cautious welcome by the Association.
The MND Association was represented on one of the NSF Working Groups, and lobbied hard to make sure the needs of people with MND would be addressed in the final document.
The Association was pleased to see that special sections setting out standards for the care of people with rapidly progressing conditions have been included in all but one of the 11 " Quality Requirements" of the NSF.
As Tricia Holmes, Director of Care Development at the MND Association, said in a recent statement to the press:
" While we welcome the NSF as a way of driving up standards and improving consistency, much depends on how and when it is implemented. There are good reasons for putting people with MND first. We believe that if health and social service providers get it right for this group, services will improve across the board for everyone with a neurological disorder.
MND is unique amongst neurological conditions in the challenge it presents to Health and Social Care Professionals, as a person's needs are complex and constantly changing."
The Department of Health has now issued a leaflet setting out some basic questions and answers about the NSF. In response to the question " How will the Quality Requirements be delivered?" the answer in the leaflet explains how the local NHS and Social services are "responsible for reviewing their services to see if they already meet the Quality requirements in this NSF.
They will need to get the views of local people with long-term neurological conditions and their families and carers, as well as voluntary organisations and professionals. This will help them to decide their local priorities for making changes and improvements to meet the Quality Requirements over the next ten years."
Primary Care Trusts (PCTs) will generally be in the lead in implementing the NSF, along with local Social Services departments.
The Association would very much like Branches and Groups in England to support efforts to bring about early benefits for people affected by MND by contacting their local PCT and registering an interest in the implementation process.
We will be finding out from your local PCT who is responsible for coordinating the implementation of the NSF on Long-Term Conditions and asking what arrangements are being put in place to obtain the views of local people affected, as required in the implementation guidelines.
It is hoped that someone who understands the needs of people with MND will be able to participate in any local implementation group that's set up, and will champion our priorities for action.
Holidays
For people who have mobility difficulties the following list may be of interest:
Old House Country Park, Berwick upon Tweed, Northumberland
Caravan park with adapted caravans for hire. Disabled entrance to Club House.
Telephone: (01289) 305 288
Kingfisher Barn Holiday Cottages, Abingdon on Thames, Oxfordshire
Adapted cottages for hire set in the heart of the Oxfordshire countryside.
Telephone: (01235 537 538)
The Calvert Trust, Kielder, Northumberland
For the more adventurous the Calvert Trust based at Kielder offers a whole host of outdoor activities. Choose from three types of breaks:
- Care Packages
- Centre Activity Holidays
- Self Catering Cottages
Telephone: (01434) 250 232