High Court Judge (retd) Sir Nicholas Mostyn sets out a social contract between the British state and people with Parkinson's disease
The basic social contract
We, the representatives of the British state ("The State") undertake in this social contract that the personnel of the State shall use their best endeavours to provide the resources set out in the Mutual Obligations below.
We, the people with Parkinson's Disease ("PPs"), undertake in this Charter to use our best endeavours to meet our obligations set out in the Mutual Obligations below. Above all, we accept and acknowledge that our fundamental duty is to make the most of what we have. While we should be given sufficient resources on which to draw, the responsibility lies with us to use them to promote our well-being, and to make the most of life at every opportunity and at every stage.
The Mutual Obligations: CARPE DIEM
C - Cure
The State will provide not less than £x p.a. for research into a cure (we need to come up with a figure based on other illnesses in the UK and money given for PD in other countries)
PPs will undertake to participate in research when available
A - Access
The State should give PPs regular access to a consultant and other professionals, and in any event not less than once a year.
PPs will not abuse the system by not attending appointments.
R - Regional equality
The State will smooth-out postcode lottery.
PPs will not take no for an answer if yes is available elsewhere
P – other Professionals
The State will ensure that PPs have a multidisciplinary team looking after them.
PPs will never cancel appointments without good reason
E - Education
The State will educate people more broadly about the illness.
In order for people to understand the illness firsthand, PPs will undertake to spread the word and not hide themselves away
D - diminish Depression.
The State through the provision of counselling, companionship, and a variety of activitieswill seek to alleviate the scourge of depression caused by Parkinson's.
PPs will attend activity classes and spread the word.
I - isolate Isolation
The State will seek to ensure that no single PP is left for more than two consecutive days on their own. They will be visited by health care specialists, relative or some other person.
PPs will undertake to play their role and to welcome people to their homes, or will act as the people who visit others.
E - Exercise energetically, and Eat effectively
The State will provide exercise classes at a subsidised rate for those who cannot afford it and ensure that dietitians are available for consultation (as part of the multidisciplinary team).
PPs will attend the exercise classes, paying if they can. PPs will take responsibility for theirdiets and ensure they eat healthily.
M - Medication.
The State will ensure that sufficient medication is provided, especially in hospital.
PPs will take the drugs when prescribed using whatever means possible to remember to do so.
Proviso
This Social Contract is not legally binding and may not be the subject of court proceedings or regulatory complaint. It is no more than a statement of good professional practice.
Signed in London on [DATE] by
[Name] Minister of Health on behalf of the UK Government
[Name] on behalf of the Scottish Government
[Name] on behalf of the Welsh Government
[Name] on behalf of the Northern Ireland Government
[Name] on behalf of Parkinson's UK
[Name] on behalf of Cure Parkinson's
Charlie Appleyard on behalf of Sport Parkinson's
Gillian Lacey Solymar on behalf of the Movers & Shakers Team
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