We welcome the following newest members and supporters of The Alliance:
- Matthew’s Friends
- Ring 20 Research and Support UK
- SMA Support Trust
- Teva UK
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Dignity in Dementia – useful resources…
Via Cumbria CVS
https://www.scie.org.uk/e-learning/dementia Although this free dementia e-learning course is aimed at anyone who comes into contact with someone with dementia and provides a general introduction to the disease and the experience of living with it, it is really good for anyone to complete – 7 modules to complete
https://www.futurelearn.com/ they have some good courses on dementia anyone can join and its free
https://mooc.utas.edu.au/courses/understanding-dementia-2019-02 University of Tasmania, Enrolment is now open to their ‘Understanding Dementia’ course. Their website describes the course as follows;
Understanding Dementia is a Massive Open Online Course (MOOC), offering university-quality education about the latest in dementia research and care. This free course provides an opportunity to engage with the perspectives of an international community, without requiring exams or assignments.
‘Take Time To Allow Time’
Triple A (All About Autism) is pleased to invite you to the launch of ‘Take Time To Allow Time’ – a production filmed locally which aims to assist with autism awareness in education settings. The film was a successful partnership project with North Cumbria Clinical Commissioning Group, funded through NHS England.
Details of the launch are:
Date: Friday 3rd May 2019
Venue: The People First Conference Centre, Milbourne Street, Carlisle. CA2 5XB
Time: 11:00hrs – 13:00hrs
Lunch: A lovely lunch and refreshments will be provided.
RSVP: As there are limited places, you need to confirm your attendance by Friday 19th April 2019
As there are limited places, please confirm your attendance by Friday 19th April 2019.
Christine Callery, Email: admin@tripleaproject.org.uk
Department of Health and Social Care – Review of the National Autism Strategy ‘Think Autism’: call for evidence
In April 2014 the government published Think Autism, a strategy for meeting the needs of autistic adults in England. This year the Department of Health and Social Care, working with the Department for Education, will review the strategy and extend it to cover children as well as adults. The results of this consultation will be used to find out where people think progress has been made and where more needs to be done in the future.
The closing date for comments is 16 May 2019.
IMPORTANT Action for Health Network Events
PLEASE NOTE CHANGE OF DATE: CVS have had to postpone the next Action for Health meeting Tuesday 26th March in Barrow due to unforeseen circumstances. The meeting will now take place Thursday 30thMay 2019
Other Action for Health Network diary dates:
Monday 29th April 9.30 am to 12 noon Penrith North Cumbria health system updates (to include information about the proposed merger, 10 year NHS Plan, mental health services transfer to Northumberland Tyne & Wear Foundation Trust & Primary Care Networks)
Tuesday 14th May 2019 9.30am to 12.30pm Penrith
Thursday 30th May Barrow – South Lakeland & Barrow ICC update and information session
We are Cafe Neuro in Barrow – working with St Mary’s Hospice
We’ve been delighted at the progress of Cafe Neuro on Thursdays in the Living Well Centre, Barrow and the support from the team at St Mary’s Hospice which hosts us. Lots of activities are going on there, as well as our Cafe Neuro:
There is an agency day on 26th April 10am at the Living Well Centre where a total overview of the Make Do and Mend programme will be available as well as a look around the Living Well Centre.
We’re fortunate to have great support from Stephanie Roberts St Mary’s Living Well Facilities Manager
Email: stephanieroberts@stmaryshospice.org.uk
Address: The Living Well Centre, 299-301 Duke Street Barrow in Furness, LA14 1XU 01229 44-44-07
Web: www.stmaryshospice.org.uk
Better urgent care for people with epilepsy
People in the North West Coast with epilepsy will avoid unnecessary admissions to hospital thanks to a project giving paramedics instant access to their patient information.
The project aims to connect patient information from GPs, hospitals and ambulance services in the North West Coast and make it available to paramedics and A&E staff when providing urgent care to epilepsy patients. This builds on work by the Innovation Agency in the Connected Health Cities programme and is delivered by Liverpool Health Partners with funding from UK Research and Innovation. Full story here.
Neuro Numbers 2019
A reminder to read this excellent report from the Neurological Alliance
To mark the start of Brain Awareness Week, The Neurological Alliance published a new report; Neuro Numbers 2019. An update to the 2014 publication, Neuro Numbers highlights that the number of neurological cases has now reached at least 14.7 million in England. This equates to more than one in six people living with one or more neurological conditions.
The NA is using this new data call for greater prioritisation of neurology by the health and care system to ensure the needs of this growing patient group are met. As well as the latest prevalence data, Neuro Numbers also brings together all the latest pan-neurological data that is available for England.
This shows that the number of people being admitted to hospital with a mention of a neurological condition has increased by 24% over the five years to 2016/17.
You can read our new report on our website, along with a news story about the need for decision makers to address the issues being highlighted by neurology data and intelligence.
Read Sarah Vibert’s blog about the need for more and better data.
Sarah Vibert
Chief Executive
T: 01923 882590 M: 07903376720
The Neurological Alliance www.neural.org.uk
Follow us on Twitter: @NeuroAlliance
My MS My Needs Survey
The MS Society has launched the My MS My Needs survey. It is the largest survey of people affected by multiple sclerosis (MS) in the UK. This year, for the first time, they are also running the MS family & friends survey, alongside My MS My Needs. Electronic links to these surveys are as follows (and flyer attached);
My MS My Needs: www.ukmsregister.org/landing/mymsmyneeds
MS Family & Friends: tinyurl.com/ms-family-friends
There is also a blog about this https://tinyurl.com/MS-Surveys
The surveys are open until 31 May 2019.
Yvonne Trace
Regional External Relations Officer (Greater Manchester, Lancashire & South Cumbria) | MS Society
DD: 0203 828 6854
Switchboard: 020 8438 0700
Mobile: 07715 428 177
New patient reps for National Neuro Advisory Group
Two new patient reps have been elected to sit on the National Neuro Advisory Group, for a period of two years: Chris James, Director of External Affairs at the Motor Neurone Disease Association, and Chloe Haywood, UK Acquired Brain Injury Forum Executive Director. They replace Genevieve Edwards, the MS Society’s External Affairs Director, and Val Buxton, from Parkinson’s UK, who had come to the end of their terms.
