Cross Party Group Details
Cross Party Group Title:
Muscular Dystrophy and Neuromuscular Conditions
Group membership and office holders
Name of Group Chair:
Rhun ap Iorwerth
Names of other Members of the Senedd:
Mike Hedges MS
Huw Irranca-Davies MS
Mark Isherwood MS
Name of Secretary and Organisation:
Matthew Rose, Muscular Dystrophy UK
Names of other external members and organisations represented:
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Other meetings of the Group since the last AGM
Meeting 1
Date of Meeting:
November 10 2021
Attendees:
Rhun ap Iorwerth , Chair of the CPG on Muscular Dystrophy and Neuromuscular Conditions
Heledd Roberts , Senedd Office Manager
Cefin Campbell MS, Member of Senedd
Catherine Woodhead , CEO of Muscular Dystrophy UK
Bobby Ancil , Head of Health Service Development, Muscular Dystrophy UK
Michaela Regan , Senior Health Policy Manager, Muscular Dystrophy UK
Lucia Gilespie , Advocacy & Information Officer – Wales, Muscular Dystrophy UK
Gabriella Lott , Policy Intern, Muscular Dystrophy UK
Rachel Salmon Neuromuscular Care Advisor
Alice Spilsbury Neuromuscular Care Advisor
Dr Ellie Marsh Neuromuscular Consultant
Gwenno Davies Occupational Therapist
Heledd Tomos Physiotherapist
David Heyburn Public Health Wales and Vice Chair of Welsh NM Network
Ffion Johnstone, Representative of Betsi Cadwaladr Health Board
Lisa Love-Gould , Clinical Director of Therapies (Cwm Taf Morgannwg Health Board)
Richard Haselgrove , Patient representative
Morvenna D Richards, Public contributor
Stephen Hiles , Patient
Summary of the issues discussed:
The impact of COVID-19 on people with a neuromuscular condition in Wales, alongside gaps in neuromuscular services in Wales, and how to address these gaps
Meeting 2
Date of Meeting:
05 July 2022
Attendees:
Rhun Ap Iorwerth, Chair of the CPG on Muscular Dystrophy and Neuromuscular Conditions
Heledd Roberts , Office of Rhun Ap Iorwerth
Alicja Zalesinska, Chief Executive Officer, Tai Pawb
Alex Osbourne Disability & Equality Officer, Disability Wales
Eleanor Marsh Consultant Neurologist
Gwenno Davies , Occupational Therapist
Ann Jones Person living with a muscle-wasting condition
Morvenna Richards Person living with a muscle-wasting condition
Carolyn Middleton Person living with a muscle-wasting condition
Joanna Williamson, Person living with a muscle-wasting condition
Stewart Ross Person living with a muscle-wasting condition
Richard Haselgrove, Person living with a muscle-wasting condition
Paul Magness, Person living with a muscle-wasting condition
Dan Dowsett . Person living with a muscle-wasting condition
Rebecca Brown Person living with a muscle-wasting condition
Sylvia Evans Person living with a muscle-wasting condition
Julia Davage Person living with a muscle-wasting condition
Cerianne Haines Person living with a muscle-wasting condition
Brenda Gibbins Person living with a muscle-wasting condition
Eleri Morgan Person living with a muscle-wasting condition
Gareth & Katherine Hutchinson Parents to an individual living with a neuromuscular condition
Stephen Hiles Person living with a muscle-wasting condition
Michaela Regan Head of Policy and Campaigns, Muscular Dystrophy UK
Matthew Rose Health Policy Manager, Muscular Dystrophy UK
Bianka Zabarylo Policy and Campaigns Assistant, Muscular Dystrophy UK
Rob Burley Director of Campaigns, Care and Support, Muscular Dystrophy UK
Lucia Gillespie Advocacy & Information Officer – Wales, Muscular Dystrophy UK
Summary of the issues discussed:
In July 2022, the group met to discuss access to housing adaptations in Wales, following a debate that took place in the Senedd regarding additional flexibilities for motor neuron disease. The meeting focused on the impact that delays in accessing adaptations have, and the next steps the government have set out to address this
Meeting 3
Date of Meeting:
09 November 2021
Attendees:
Rhun Ap Iorwerth , Chair of the CPG on Muscular Dystrophy and Neuromuscular Conditions
Mike Hedges MS
Huw Irranca-Davies MS
Mark Isherwood MS
Gwenno Davies Children's Occupational Therapist
Heledd Tomos Physiotherapist, Swansea Bay UHB
Stewart Ross , Person living with a muscle-wasting condition
Brenda Gibbins , Person living with a muscle-wasting condition
Morvenna Richards Person living with a muscle-wasting condition
Janet Nielson Person living with a muscle-wasting condition
Jayne Rees Person living with a muscle-wasting condition
William Silcox Person living with a muscle-wasting condition
Cerriane Haines Person living with a muscle-wasting condition
Carolyn Middleton Person living with a muscle-wasting condition
Richard Haselgrove ,Person living with a muscle-wasting condition
Richard Enos Person living with a muscle-wasting condition
Paul Magness Person living with a muscle-wasting condition
Gareth & Katherine Hutchinson ,Parents to an individual living with a neuromuscular condition
Stephen Hiles Person living with a muscle-wasting condition
Lynne Taylor Parent to an individual living with a neuromuscular condition
Nicola Davies Person living with a muscle-wasting condition
Margaret Ware Person living with a muscle-wasting condition
Matthew Rose Health Policy Manager, Muscular Dystrophy UK (MDUK)
Lucia Gillespie Advocacy and Support Officer, MDUK
Rob Burley, Director of Campaigns, Care and Support
Summary of the issues discussed:
MDUK gave an update on their UK-wide cost of
living report. MDUK spoke about some of the main areas where they
were making recommendations to governments, local authorities, and
health bodies/providers which broadly covered energy costs, rising
costs of daily goods, the cost of transportation to appointments,
costs of treatment and care, and the costs of adaptations and
equipment. Additionally the group discussed the accessibility of
public spaces.
Professional lobbyists, voluntary organisations and charities the Group have met during the previous year.
[names of lobbyists/organisations/charities should be included as follows, e.g.]
Name of Organisation:
Disability Wales
Leonard Cheshire Wales
Tai Pawb
Name of Group:
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Name of Organisation:
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Name of Group:
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Annual Financial Statement
Cross Party Group Title:
Muscular Dystrophy and Neuromuscular Conditions
Date:
09/11/22
Name of Chair:
Rhun ap Iorwerth
Name of Secretary and Organisation:
Matthew Rose, Muscular Dystrophy UK
|
Title |
Description |
Amount |
|
Group’s Expenses |
None |
£0.00 |
|
Costs of all goods |
No goods bought |
£0.00 |
|
Benefits received by the group or individuals members from external bodies |
No benefits received. |
£0.00 |
|
Any financial support or other support. |
No financial support was received. |
£0.00 |
|
Total |
£0.00 |
|
Services provided to the Group, such as hospitality.
All hospitality paid for [include the name of the group/organisation].
|
Date |
Name
and description |
Costs |
|
|
|
£0.00 |
|
|
|
|
|
Total |
£0.00 |
|