Cumbria NA and Cumbria University – Neuro Study Day

Monday 13th May saw lead members of the Cumbria Neuro Alliance at Cumbria University offering a full day programme for students covering a variety of neurological conditions.

The participants were welcomed by Professor Brian Webster-Henderson Pro Vice Chancellor Health and Susie Wilson the OT programme lead chaired the day.

Susie Wilson

After Glenys Marriott’s talk ‘From A and E to recovery, the Neuro Trauma pathway’, Sara Fisher, Head of Clinical Services at A Chance for Life presented ‘The Value of the MDT approach for the care. treatment and support of people affected by neurological conditions.’

Sara Fisher

Over lunch there was time for discussion with leads, and plenty of handouts were available on all the conditions.

Angie Stewart and Yvonne Trace, Regional External Relations Officers, MS Society, presented ‘Understanding MS.’

Angie Stewart Yvone Trace and Susie Wilson

All about MS

This was followed by John Kane a volunteer from Parkinson’s UK who gave a presentation about living with Parkinson’s and the amazing work he does in the community to share his experiences.

John Kane

Theresa Westhead Specialist Huntington’s Disease adviser led the first session after lunch.

Theresa Westhead

Sue Muller Regional Care Development Adviser Lancashire and Cumbria MND Association together with Joni Mitchell and MDT members spoke about Living with MND.

Joni Mitchell MND Community Outreach Practitioner N and W Cumbria

We were pleased to welcome Paul from Welbeing who brought lots of handouts about their services in Cumbria https://www.welbeing.org.uk/

The day finished with a very quick update about Rare Neurological Conditions and a final photo of the team.

 

This was a thoroughly enjoyable day and I hope it encouraged students to stay in Cumbria when they graduate and to work in neuro services.  Thanks Susie and Angie for coordinating the programme and we look forward to next year!


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National Neuro Alliance membership

Alliance Membership

The NA are pleased to report that the overall picture was very positive.

  • 93% of respondents either very satisfied or satisfied with membership
  • Top three benefits of being members, according to respondents, are:
  1. Information about policy developments via newsletters, webinars and meetings
  2. Opportunity to affect public policy through involvement in consultations
  3. Raising the profile of my organisation/the condition my organisation represents through being part of a collective neurological voice

National neuro advisory group update

National Neuro Advisory Group updates

The NNAG is an initiative to bring together those in positions of leadership within neurosciences in order to drive forward initiatives/action to improve outcomes for patients living with neurological conditions. Read more here. Sarah Vibert is Co-Chair of NNAG, alongside Prof Adrian Williams Chair of NHS England’s Neurosciences Clinical Reference Group, and The Neurological Alliance funds the part-time NNAG project manager role (Hannah Verghese).

The most recent NNAG meeting was held on 2nd May.  The meeting included presentations from the National Stroke Programme and the National Dementia Access Task Force.

A new sub-group of the NNAG focusing on care planning is undertaking research into the existence and benefit of positive care planning activities for neuro patients.

They will use the Neuro Alliance patient survey results to support their work.

Specialised commissioning neurosciences transformation project

Specialised commissioning neurosciences transformation project
The Neurological Alliance has been invited to sit on the expert advisory group which will provide overall steer to NHS England’s specialised commissioning neurosciences transformation project. Members attended the first expert advisory group meeting, at which an overview of the project and progress to date on each of the six workstreams was given: the neurosurgery workstreams – brain tumours (elective pathway), pituitary (low volume pathway), subarachnoid haemorrhage (emergency pathway), and the neurology workstreams – MS, epilepsy, neuro-immunological conditions.

Work will be undertaken to determine whether these can be scaled up, with the aim of defining an optimum neuro-wide model. Additional work from any other additional pathways in other condition areas will be taken into consideration. The neuro-wide model will be tested across a local footprint to refine it. Following this, tools will be developed to enable the model to be implemented via regional specialised commissioning teams (years 3-5 of the programme of work).  Other outputs will include guidance on pathways, revising the new service specifications as needed, and the provision of best practice examples. Any changes to the provision of specialised neurology services will also be made during the implementation phase.

NICE neurological conditions in primary care guideline published,

The Neurological Alliance is disappointed in this new publication from NICE
The NICE guideline on suspected neurological conditions: recognition and referral has been published. The Neurological Alliance is disappointed with the result and believe this constitutes a missed opportunity to improve care. The Alliance is arranging a meeting with NICE to take this up with them.

Cafe Neuro Barrow – update

We are delighted to welcome Fiona Kennaugh to Cafe Neuro. Fiona has been running sessions to support people with early onset Parkinson’s in Barrow. From June she will be running a monthly session and will be introducing some interesting new sessions, such as using Virtual Reality!

Check out the programme dates at https://cumbrianeurologicalalliance.wordpress.com/new-neuro-drop-in-centre-barrow/barrow-neuro-dropin-centre-programme/

Anyone living with a neuro condition, their carer’s, family or support workers are welcome to attend any session. A warm, friendly environment is offered from people who understand what it is like to live with a neuro condition.

 

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.

Web link: https://www.gov.uk/government/consultations/review-of-the-national-autism-strategy-think-autism-call-for-evidence