Last year we began an exciting new project called “Café Neuro”; this is an informal afternoon gathering each month, where people who know what it’s like to live with neurological or neuromuscular conditions, whether their own, a friend or relative, someone who works in neurology or just simply someone with an interest. Over a cuppa, people who come can meet each other and chat, and listen to a short talk from service provider and ask them anything.
The first of these started meeting in Dudley and more recently we saw the launch of Walsall Café Neuro (see picture).
The shortage of Neurological Consutants is something we are very concerned about and have been campaigning on for the last two years. Have a look at this BBC Radio 5 program : http://www.bbc.co.uk/programmes/b09gfy3r It’s an hour long programme with Adrian Goldberg. It refers to a report from the National Neurological Alliance which came out earlier this year and can be downloaded from here.
A new Neurology data and analysis report is available from Public Health England. It explains how commissioners and health professionals can use data and analysis for decisions about neurology services and interventions. Click here to find out more information.
Our spokesperson Bryan Gould is nearing the end of his current challenge. He has Muscular Dystrophy, so walking is very difficult for him but a year ago he set himself a challenge to walk 500 miles to the next Muscular Dystrophy conference in October this year. His plan was to achieve this one day at a time, walking at least one mile every single day, wherever he happened to be; that included a visit to the House of Commons!
He is very nearly there, and will complete his challenge on Saturday 7th October.
He has a Just Giving page……. And he's already raised a huge amount for his charity.
Bryan Gould on BBC TV, 27th September 2017
We've got plans in place for our next Question Time event to be in Sandwell in the New Year, probably towards the end of February, and our fourth one will be in Walsall in April, both dates still to be finalised.
5th September Wolverhampton
3rd April Dudley
Our first Question Time event happened on 3rd April; it was attended by nearly 100 people, and unanimously declared to have been a resounding success. This time it was a joint event with Parkinson's UK, marking their Awareness Week, and special guests the High Sheriff of the West Midlands, Dr. Keith Bradshaw, and the Mayor and Mayoress of Dudley, Mohammed Hanif and Zabeda Khanam were in attendance.
On behalf of Parkinson's UK, Dr. Bradshaw made a presentation to Parkinson's volunteer Stephen Williams, who by coincidence is also a volunteer with BCNA. Speakers from Parkinson's UK gave excellent and enlightening presentations.For more information about the award click here
For the BCNA Question Time our Panel of specialists from Dudley CCG spoke briefly about their work, after which members of the audience discussed what they had heard and then fired questions at the Panel members. Their honest answers may not always have been what the audience hoped to hear, but were much appreciated. Further Question Time events are planned to take place in Walsall and Sandwell at later dates, thus ensuring that all areas of our Black Country are included.
If you would like to be kept informed about this, email us at firstname.lastname@example.org to be added to our Mailing List.
Click here to access the webpage (please note this will open in a new page)
Please click here for a copy of our 2016 Annual Report. You will be able to save it to your own computer.
Back in 2012, the MS Society conducted a survey of people across the UK with MS, which provided us with the largest piece of patient-reported data that the UK MS sector had ever collected. The findings were published in the 2013 report, ‘A lottery of treatment and care’
We conducted the second “My MS My Needs” survey between February and April this year, and have published the result. Click here for the results.
Many questions, including those on access to disease modifying treatments (DMTs) and MS specialists, are the same as 2013 and allow us to compare data to the first survey. We also asked some new questions, based on the changing service landscape.
As someone either directly or indirectly affected by a neurological / neuromuscular condition who better to work with the Black Country Neurological Alliance
To ensure that the feedback & solicited views of people directly or indirectly affected by a neurological / neuromuscular condition within the Black Country are appropriately represented by the BCNA in its dealings and engagement with health and social care networks, clinical commissioning groups (CCGs), healthcare collaborations, working groups, forums and charities.
• Be committed to the purpose and values of the BCNA
• As felt comfortable attend healthcare meetings and events as an opportunity to feedback to the BCNA on local support services
• Encourage neurological / neuromuscular charities and associated support groups to work with the BCNA to improve health and social care services here in the Black Country Specific Tasks:
• If possible attend your local area BCNA road show / neurological forum
• Provide timely feedback to the BCNA committee for healthcare meetings and events attended
• If possible attend our AGM
• Provide timely out of pocket expense submissions for any agreed BCNA activities
• Willingness to contribute as part of a team
• Able to deal with confidential information sensitively and appropriately
• Ability to recognise and respect a diversity of views, attitudes and lifestyles
• Able to contribute to BCNA initiatives / discussions
• Computer skills and access to e-mail desirable but not essential
• Personal agreement on time you wish to commit to the role
• Joint agreement with BCNA on the support you feel comfortable to offer Training and support (provided by BCNA):
• Induction pack and induction session
• Out of pocket expenses
• Ongoing support from BCNA Neuro Champion lead and fellow BCNA committee member(s)
To apply or for more information email us at email@example.com .