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Report highlights failings in treatment of people with neuro conditions

23 Jul 2019

People with neurological conditions are facing long waiting times, poor access to specialists and a lack of personalised care.

That’s according to a new report published by The Neurological Alliance, based from a survey of more than 10,000 people with neurological conditions.

The report, Neuro Patience, covered three main healthcare themes: accessible, personalised and well-rounded care and support, and is run every two years.

The report found that:

  • 39% of people reported seeing a GP 5 or more times before being referred to a neurologist.
  • Following a referral, 1 in 3 patients waited more than 12 months for their appointment.
  • 55% of respondents said they had experienced delays in accessing healthcare.
  • 34% do not believe they see a specialist often enough to meet their needs.
  • 43% of people were not given written information when they were told they had a neurological condition.
  • 30% did not feel involved in making choices about their healthcare.
  • 40% of respondents reported their mental health needs were not being met at all.

The report also highlighted failings in the social care and welfare system, as well as discrimination in the workplace for people with neurological conditions.

Sarah Vibert, chief executive of The Neurological Alliance, said: “The survey results are shocking. People with neurological conditions are being forgotten and they are running out of patience. Our survey shows that people with neurological conditions have not been prioritised by our health and social care system and as a result little has changed over the last 6 years.”

The report has recommended that a national neurology plan for England should be urgently developed to address these shortcomings.

It stated that neurology should be prioritised for mental health improvement initiatives aimed at people with long-term conditions.

Comments: read the 5 comments or add yours

Comments

For well over thirty years I have had what has been diagnosed as cryptogenic temporal lobe epilepsy. During this period I have run the gamut of combinations of various medications, some more effective than others. I am under the care of Queen Square, who run their epilepsy clinic on ONE day a week (Wednesday). As a result my appointments with consultants are spaced at approximately six month intervals.
I feel very strongly that there could be a rather more tailor made approach to this condition, with perhaps the treatment combining medication with other techniques such as relaxation exercises and, in my case a cappella group singing
from which I have been gaining huge benefits over the last six or seven years. I believe that some GP practices (but not mine) actually prescribe singing because of its therapeutic effects.
As I am what has been termed an 'expert patient' I have often offered my 'expertise' to one or more of the epilepsy related research projects I have read about, but have had no success in becoming involved.( I would very much appreciate any relevant suggestions Epilepsy Action may have.)

Submitted by roger stephens on

Dear Roger,

Thank you for your comment. We agree that it would be great if people with epilepsy could access other tailor made therapies alongside their medicines and existing treatment. There are some moves in that direction with social prescribing becoming more widespread on the NHS.

We hear from many people with epilepsy who find relaxation exercises a good way to take care of their own wellbeing. Some things like this can be accessed without a prescription and for free, for example community choirs for singing or relaxation videos on YouTube.

Thank you for sharing what’s worked for you. People also share these sorts of tips on our forum and Facebook page.

In terms of being involved in research – we contact our members and post on Epilepsy Today when there is a chance to get involved. But often researchers are looking for a specific group out of all people with epilepsy so not everyone can apply.

Best wishes, Ashley 

Epilepsy Action Helpline Team

Submitted by Ashley - Epilep... on

I seen.my Neurologist 2 weeks ago it was meant to be about cbd.
They put my zonegram up daily by 50 percent.
My previous Neurologist changed all my medication.
They were amazing.
They're gone.
The head Neurologist put me on that and has up my medication by 50 percent. That's one of 6 different medicines I am on.
I was on epilium for 7 years.
Should not be on it for more than 2 years!
Do they have shares in the company's do you think?
I do.

Submitted by Andrew Flood on

I have sent a question in relation to Phsychological epilepsy to you

earlie this week if not the end of last week but have seenor heard nothing at all.

I did speak to a person during the week , and i again have heard or seen no response
What is the problem or has this been lost in the system

Submitted by derrick young on

Hi Derrick,

Unfortunately, it doesn't look like your previous question has come through. You could try commenting again on this post, or email helpline@epilepsy.org.uk. Alternatively, you could call 0808 800 5050 for free.

All the best,

Josh - Epilepsy Action

Submitted by Josh - Epilepsy... on
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