We've just today received information from Genetic Alliance UK regarding some patient involvement events in Wales during October that you might want to get involved in, if you're in Wales:
Accessing specialised services and medicines in Wales
Patient Engagement Events 2013
Genetic Alliance UK will be holding events across Wales in October for patients and families affected by rare conditions to talk about their experiences of accessing specialised services and therapies.
The project itself developed after patient organisations raised concerns over gaining access to specialised services which are provided by centres in England. Some patients have also experienced problems in gaining funding for medicines through Individual Patient Funding Requests in Wales. We want to hear your views.
How can you get involved?
Events will provide an opportunity for patients and families to come together to highlight their experiences and discuss recommendations for improving fair access to services and therapies for patients.
The events will be held at the following times/venues:
17th October, 10.30 - 14.00, Maldron Hotel, Cardiff
23rd October, 10.30 - 14.00, Dragon Hotel, Swansea
30th October, 10.30 - 14.00, Metropole Hotel, Llandrindod Wells 31st October, 10.30 - 14.00, Ramada Plaza, Wrexham
Complimentary refreshments including a buffet lunch will be provided.
Please email Emma Hughes,
[email protected] if you are able to attend specifying which event you will be attending along with your name and contact details.
And in Cheltenham:
I am writing on behalf of the Gloucestershire Neurological Alliance, which is a group of people with diverse neurological conditions and interested charities who meet regularly to try and work with the local CCG and social care services to improve the services to those with neurological conditions in the county.
We have only been in existence for 2 years and are seeking to make people aware of us and to kindle interest in joining us to make the local voice as strong as possible. www.glosna.org.uk .
To that end we are taking the opportunity to use the information bus administered by the Glos CCG in Cheltenham on October 10th 10am -4pm and it will be parked in the town centre with the aim of promoting not just our own organisation , but the work done locally by the many charities who serve those with neurological problems.
If anyone would like to go along to meet us, we'd be delighted to see you.
Jean Waters
Email: [email protected] for further information.