Neurological conditions: Getting the word out

Written by: Katherine Crawford, Director of Parkinson’s UK in Scotland, Parkinson's UK

Reflections on the 2015 UK Parkinson's Audit and the importance of ensuring that people get the right information at the right time.

Parkinson’s UK is the leading research and support charity for people living with Parkinson’s. We pride ourselves on having services that can offer support to anyone affected by Parkinson’s, wherever they are in Scotland.

Yet the 2015 UK Parkinson’s Audit (this link will take you away from our website) told us that only 63 per cent of people with Parkinson’s were signposted to us at the point of diagnosis.  And only 65 per cent felt they received enough information at that time.  This audit has given us our biggest ever picture of the state of Parkinson’s services, showcasing good practice but highlighting many areas for improvement.  The right information at the right time is a crucial element within that.

For the very first time, the audit included a Patient Reported Experience Measure (PREM), and alongside that the charity ran its inaugural ‘Your Life, Your Services’ survey, giving people with Parkinson’s a stronger voice in rating the services they receive.  The survey is live again now (this link will take you away from our website) and is open to everyone living with Parkinson’s.

The picture I paint about information is not unique to Parkinson’s, I know.  However, for me, as the Director for Parkinson’s UK in Scotland, seeing these statistics in black and white renews my vigour that every single one of the 10,000 plus people living with Parkinson’s in Scotland should be equipped with the knowledge about Parkinson’s and the back up that they need to enable them to take control of their life with Parkinson’s.

Parkinson’s UK delivers great support at a local level.  We have a UK wide Helpline, offering a client led mix of medical, informatic and peer support.  We run a network of volunteer led local groups right across the mainland and in some of the island communities.  We’re growing our Self Management Programme in Scotland.  And now we’re working with local volunteers to develop our “on the ground” offer.

One of our consistent successes is that, from core funding, we employ a team of Parkinson’s Local Advisers covering every Health Board area in Scotland.  The team supports over 1000 people affected by Parkinson’s a year in Scotland, sharing knowledge and information about Parkinson’s, supporting people to make sure they claim the appropriate benefits and increasingly supporting people through the challenges of the Social Care system.  Our Local Advisers have a depth of knowledge and networks that helps.  And indeed can work with people to find solutions that enable them to live a better quality of life at home, in line with Scotland’s 2020 vision.

Our Local Adviser worked with a family where an adult son cares full time for his Dad who has Parkinson’s. He told us that a bit of time out to go to the football on a Saturday with his mates would give him the break he needed.  Social Work was prepared to fund respite, but couldn’t find someone to provide the care needed.  Our Local Adviser stepped in.  She had the time, networks and tenacity needed to give the family that essential break, enabling the person with Parkinson’s to continue at home.

All this is not enough.  We offer a professionally run service which delivers fantastic results for people year in year out, and not everyone with Parkinson’s knows about it, even if they’re connected to their local Parkinson’s health services.

In some places however, great work is happening:

  • Our UK Parkinson’s Excellence Network north team has recently introduced a scheme where every person receives consistent information about the charity and our offer shortly after diagnosis.
  • In some Health Boards, our Parkinson’s Local Advisers are present at diagnostic or assessment clinics, as part of the holistic support offered.

But that’s not happening everywhere.We already provide a high quality service.  How do we make sure we build recognition of that? I know that partnerships and collaboration can support us to do that, and although there are challenges, changing health and social care structures in Scotland bring opportunities too.

The support that we provide has been developed with people living with Parkinson’s. Their experience and asks of the charity has led to the development of our services as they stand today. By the next Parkinson’s services audit, I want to make sure we’ve used every opportunity to make sure that every single person living with Parkinson’s in Scotland can connect with us.

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