Fair Care for Parkinson's campaign background
We launched our Fair Care for Parkinson's
campaign in 2009 following a report on Parkinson's services by
an independent group of MPs and Peers.
The report 'Please mind the gap:
Parkinson's disease services today' exposed major
inequalities in access to information and services for people with
Parkinson's and their families.
Major inequalities in access to services
The inequalities in access to information and services for
people affected by Parkinson's included:
I had to wait 6 months to see a specialist, then went several months without receiving any advice.
- lack of information
- lack of access to specialist
Parkinson's nurses
- long waits to see a specialist
- poor access to therapy services
- lack of support for carers of people with Parkinson's
- poor access to mental health services for those that need
them
- social care support that is inadequate and hard to access
Our members' survey, published in
2008, had previously shown that a high proportion of people with
Parkinson's weren't getting the services, information and support
they needed.
What needs to change?
Our Fair Care for Parkinson's campaign calls for all UK
governments and administrations to ensure that key high quality
services are provided for everyone affected by Parkinson's,
wherever they live in the UK.
One priority is access to Parkinson's nurses.
What Parkinson's services should look like
The NICE guideline for Parkinson's
sets out clear standards for the services that people with
Parkinson's should be getting in England, Wales and Northern
Ireland.
The SIGN
Guideline on the diagnosis and pharmacological management of
Parkinson's sets out recommendations for Scotland.
Good clinical care should include:
Good clinical care should include access to a Parkinson's nurse to help manage medication and give practical advice.
- early diagnosis and management of medication
by a specialist to help manage the effects of the condition
- access to a specialist Parkinson's nurse to
help manage medication and provide practical advice about the
condition
- early access to a speech and language
therapist to prevent, or delay, speech and swallowing
problems
- early access to physiotherapy to help maintain
mobility and avoid injuries due to falls
- social care, such as assistance with dressing
or bathing, aids or adaptations to the home, to help people to
remain independent
- access to specialist mental health services
for people who experience mental health symptoms associated with
Parkinson's, such as depression and dementia
- regular respite breaks for carers to relieve
the impact on their own health and help them continue caring
In this section
Current focus on Parkinson's nurses
We're focusing on fair access to
Parkinson's nurses.
Add your comments to our map and
help us show what a difference Parkinson's nurses make across the
whole of the UK.
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