Neurological care plan for Wales aims to improve care for thousands
A plan to help improve diagnosis, treatment and awareness of neurological conditions from epilepsy to Parkinson's disease is going out to consultation.
More than 500,000 people in Wales are affected, with 10,000 living with long-term conditions.
One charity has described the current care provision as "patchy".
The Welsh government has set out its expectations of care across the NHS in Wales and support services provided through councils and charities.
The health minister said services and support should be available everywhere.
The neurological condition delivery plan has six key aims:
- Raising awareness
- Timely diagnosis
- Fast and effective care
- Helping living with the condition
- Improving information
- Targeting research
People who have neurological conditions, which include migraine, muscular dystrophy, multiple sclerosis and cerebral palsy, often report that the main issue is improving the quality of their lives.
The Welsh government said the plan was designed to put services in place to promote self-care and allow people to live as independently as possible.
Health Minister Mark Drakeford said: "We want to ensure that those affected by any kind of neurological condition have timely access to high quality services and support to live with their condition.
End Quote Sian Griffiths
It doesn't seem cost-effective to me to give you 12 weeks physio, stop, then perhaps in six months time you get another 12 weeks because in that time you'll have gone back to square one and it'll be a waste of money”
"This should be irrespective of where they reside and whether these services are delivered through hospitals or in the community."Limited provision
A keen sportswoman, Sian Griffiths from Swansea was diagnosed with Parkinson's disease six years ago after her husband noticed her walk "was strange" during a charity walk.
She said: "I'd always been a fit person and enjoyed doing all sorts of hobbies like skiing, windsurfing, climbing, biking, you name it, I did it."
Mrs Griffiths initially saw an orthopaedic consultant but was referred on to a neurologist.
She said the diagnosis of Parkinson's was actually a relief as she had feared a brain tumour, although it was also a "big shock, as there's no history of it in my family".
She was referred to a dedicated Parkinson's unit at Gorseinon Hospital.
"I was fortunate to have the offer of physiotherapy at the local hospital and I have to say the physios I had were excellent but the provision is only for a maximum of 12 weeks," she told BBC Wales.
- Establish an all-Wales group to deliver the plan
- Assess local population needs and review services after identifying gaps in provision and changes needed
- Local delivery plans by June 2014 which will set out how inequalities will be reduced by 2016
- Agree a strategic delivery plan covering areas where an All-Wales approach is required
- Review the need for an All Wales neuroscience network
- Publish data on outcome indicators and assurance measures on websites
- Review and update delivery plans and milestones and publish an annual All Wales report on effectiveness of NHS neuroscience services in Wales
- Source: Together for Health - Neurological Conditions Delivery Plan
"Being a fairly fit person to begin with I was a different ball game for them really as opposed to an older person with Parkinson's who may be more sedentary than I was.
"It didn't really fit my needs. It did help but I found that once the 12 weeks was finished you would have to wait before you could get another block allocated."
Mrs Griffiths said people with neurological conditions needed physiotherapy for the rest of their lives.
"It doesn't seem cost-effective to me to give you 12 weeks physio, stop, then perhaps in six months time you get another 12 weeks because in that time you'll have gone back to square one and it'll be a waste of money."
She now has private physiotherapy for two hours once a week, although it involves a two-hour journey there and back.
Her husband Rhyddin has had multiple sclerosis for 20 years and uses the same private physiotherapist for similar reasons.
He said: "Our mobility was getting worse. If it hadn't been for [private physio] I think we would have totally lost our mobility."
Joseph Carter, from the charity MS Society Cymru, said they welcomed the broad themes of the report, describing current care in Wales as mixed and patchy.
"We have pockets of very good support, certainly in Cardiff, in north Wales and around Swansea, but the more you go into rural areas - west Wales and Powys - the more patchy services get, the more difficult it is to access neurologists, specialist nurses and the appropriate treatments," he told BBC Radio Wales.
"I think the challenge for the Welsh government's report is they are trying to cover an awful lot of conditions in one go with one big report.
"On the face of it, the report is very positive and we would endorse the broad principles, but we will have to see what happens in practise, and how they can deliver change over so many different conditions."