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Annual Report 2015 and Financial Statement

Cross-Party Group for Neurological Conditions

 

Aims and Objectives

 

Aim

To improve services for people affected by neurological conditions

 

Objectives

1. To engage and work in partnership with people affected by neurological conditions

2. To raise awareness of neurological conditions and their impact on individuals and their communities

3. To inform and influence the Welsh Government about the needs of people affected by neurological conditions

4. To support and promote appropriate research

 

Membership and Meetings of the group:

 

The group will consist of Assembly Members drawn from at least three of the political parties represented in the National Assembly for Wales and representatives from the Wales Neurological Alliance Executive Committee. Meetings are open to the public, but specific invitations are sent to the member organisations of the Wales Neurological Alliance or others with an interest in neurological conditions, who the chair and secretary choose to specifically invite.

 

The current members are:

Mark Isherwood AM (Chair)

John Griffiths AM

Elin Jones AM

Kirsty Williams AM

Keith Davies AM

Megan Evans – Wales Neurological Alliance (Secretary)

Ana Palazon - Stroke Association (Chair of the Wales Neurological Alliance)
Dave Maggs – Headway
Ann Sivapatham - Epilepsy Action

Kevin Thomas - Motor Neurone Disease Association
Urtha Felda - MS Society Cymru
David Murray - Cure Parkinson's Trust
Kate Steele - Shine Cymru
Barbara Locke - Parkinson's UK
Carol Smith - Motor Neurone Disease Association
Lynne Hughes - MS Society Cymru

 

 

Professional lobbyists, voluntary organisations and charities with whom the Group has met during the preceding year

 

The group did not meet with any professional lobbyists.  Details of voluntary and charitable organisations attending meetings can be found in the ‘Meetings of the group’ section of the report.

 

 

Meetings

 

In 2015, the Cross-Party Group met three times, March 2015, June 2015 and Sept 2015.

 

 

March 2015

 

The first meeting of the year focused on co-production and its importance in the Neurological Delivery Plans. The meeting was opened by David Murray who is one of three representatives of the Wales Neurological Alliance on the Neurological Delivery Plan Implementation Group and he discussed his role as a patient representative.

 

Ben Dineen of SPICE then gave a presentation on the principles and practice of coproduction. Coproduction is a whole system approach to commissioning, design, delivery and evaluation of service provision, with shared power and shared responsibility for all. He also provided examples of co-production in action in Wales.

 

Finally, Professor William Grey of the B.R.A.I.N Unit, Cardiff University spoke of patient involvement in research. He provided a presentation about the work that will be conducted at the B.R.A.I.N. unit. The aim is for the unit to be a Welsh and UK national centre of excellence for delivering novel cell/drug/growth factor therapies to patients with currently untreatable neurological and neurodegenerative diseases

 

Minutes of 24 March 2015

 

June 2015

 

In 2012 the Health and Social Care Committee undertook a one-day inquiry on wheelchair services in Wales. The purpose of the inquiry was to consider the extent to which the recommendations made by the Third Assembly’s Health, Wellbeing and Local Government Committee’s Report on Wheelchair Services in Wales(published May 2010) had been implemented. The inquiry acknowledged that progress had been made since 2010 – especially from internal management and performance management perspective but this had not necessarily translated into service improvements for current/ future users.

 

This meeting of the Cross Party Group was devoted to reviewing if the improvements were now being felt by service users. The meeting heard from two service users who described problems with maintenance of chairs as well as issues with replacement of broken or worn parts.

 

We were also informed about the structure and purpose of the Posture and Mobility Board. There is a technical working group and a stakeholder working group for this carefully monitored services to ensure proper use of Welsh Government guidelines. The stakeholder group includes service user voices from across Wales.

 

Minutes of 9 June 2015

 

September 2015

 

At the meeting we heard from David Linden, Professor of Translational Neuroscience, Cardiff University, Honorary Consultant Psychiatrist, CVUHB Chair, Neuropsychiatry Faculty, Royal College of Psychiatrists in Wales and Dr Tanya Edmonds, Lead Consultant Clinical Neuropsychologist, Department of Neuropsychology, Morriston Hospital.

 

It was agreed that early assessment is vital but Wales is lagging behind the UK even though the long term costs of no intervention are huge. Overall there are very few resources for people with neuropsychological issues in Wales as they are often deemed not appropriate for local Mental Health Teams.

 

Minutes of 22 September 2015

 

 

Financial Statement

 

All costs are paid for by the Wales Neurological Alliance.

 

 

Accommodation and catering 

Expenses

March 2015

£55.80

£328.25

June 2015

£79.80

£0.00

September 2015

£68.28

£0.00

Totals

£203.88

£328.25

 

 

 

Overall Total

£532.13