Sue shares her experience of responding to the Scottish government's consultation on their vision to improve care and support.
I have just read through the Scottish Government’s draft National Action Plan for Neurological Conditions for the second time, for which I think I’m due many brownie points.
Believe me, it’s a long document but I think it’s important to look at it as it will affect our treatment for the next few years.
Our experiences of care and treatment
I’ve lived with MS for the last 21 years. For most of those years I’ve worked with the MS Society’s MS Research Network. I’ve also been a member of the MS Society’s Scotland Council for the last five years. So I’ve had the opportunity to meet many folk affected by MS and have listened to their experiences of the care and treatment they receive. It’s not all good.
That’s why it is important to have an action plan in place so that we can refer to it and hold the government to account. This is the first time a document of this type has been developed in Scotland.
What the plan covers
The first thing I had to get to grips with was that the plan is for all neurological conditions, not just MS. Selfishly, I found that frustrating because much of it is general and I think I know the services and treatments we want to see for MS.
In my view though we are better joining together with the other neurological conditions for increased clout.
Areas for improvement
The plan is made up of 17 commitments, and they are obviously very welcome. There are areas I would wish to improve, however.
For instance, Commitment 13 talks about supporting the neurological research agenda, and about giving people opportunities to become involved in research trials.
As a member of the MS Research Network, I know the value of getting people involved at all stages of the development of research. I’d like to see the plan commit to this, especially as there is growing recognition of the importance of public and patient involvement in research.
Who will carry out these commitments?
To put in place all these commitments, I should like to think there would be an increase in staff in all parts of neurological services. Commitment 16 talks generally of the development of staff and of changing models of workforce. But nowhere does it commit to providing the requisite number of staff to carry out these changes.
I hope it will improve our lives
This draft, if it is adopted, could improve our lives considerably. Perhaps the most important area for us is access to both health and social care services.
Commitment 4 talks about recognising the complex needs of those living with disabilities, to enable Scotland’s Integration Authorities to work better. This is very welcome. And commitment 14, suggesting rapid access to neurology clinics, is music to my ears!
Have your say
It would be well worth your while reading through this document, as we have the opportunity to comment. You can read and respond online. Your considered input is very valuable, so please share your opinion on this important document. You haven’t got long so please read the document and give them your thoughts!
Thank you Sue
We have until 8 February to respond directly. If you'd like to contribute to the MS Society's response then we're looking for input up to the 1 February. To contact us please email [email protected]