Meetings

P-06-1348 Commission suitable NHS services in Wales for people with EDS or hypermobility spectrum disorders

This page gives details of any meetings held which will, or did, discuss the matter, and includes links to the relevant Papers, Agendas and Minutes.

Note: Meeting Agenda can change at short notice. Particularly where future meeting dates are indicated more than a week in advance. Please check before planning to attend a Committee Meeting that the item you are interested in has not been moved.

 

 

Meeting: 22/04/2024 - Petitions Committee (Item 3)

3 P-06-1348 Commission suitable NHS services in Wales for people with EDS or hypermobility spectrum disorders

Supporting documents:

Minutes:

The Committee considered the petition and noted that this is the fifth consideration of this petition. Given that the petitioners are in contact with NHS officials and intend to meet with them, Members agreed to close the petition and wished the petitioners well in their campaign.

 

Meeting: 29/01/2024 - Petitions Committee (Item 3)

3 P-06-1348 Commission suitable NHS services in Wales for people with EDS or hypermobility spectrum disorders

Supporting documents:

Minutes:

Mike Hedges MS declared the following relevant interest under Standing Order 17.24A:

 

He chairs the Cross-party group on rare diseases.

 

Joel James MS declared the following relevant interest under Standing Order 17.24A:

 

He has family members with the condition.

 

The Committee considered the petition and noted that whilst the petitioners welcome the progress and opportunity to work with the National Strategic Network for musculoskeletal conditions and the rare disease implementation network, they have some further questions they would like to be answered. In light of this Members agreed to write back to the Minister for Health and Social Services to seek answers to the questions raised by the petitioners.

Meeting: 11/12/2023 - Petitions Committee (Item 5)

5 P-06-1348 Commission suitable NHS services in Wales for people with EDS or hypermobility spectrum disorders

Supporting documents:

Minutes:

The Committee considered the petition and agreed to write to the Minister in order to share the petitioner’s further questions and seek a response.

Meeting: 25/09/2023 - Petitions Committee (Item 4)

4 P-06-1348 Commission suitable NHS services in Wales for people with EDS or hypermobility spectrum disorders

Supporting documents:

Minutes:

Joel James MS declared the following relevant interest under Standing Order 17.24A:

 

He has family members who suffer with the condition.

 

The Committee considered the petition and agreed to write again to the Minister highlighting the concerns raised that rheumatologists are refusing to see EDS or hypermobility spectrum disorders patients, emphasising the need to address this with Local Health Boards.

Meeting: 03/07/2023 - Petitions Committee (Item 3)

3 P-06-1348 Commission suitable NHS services in Wales for people with EDS or hypermobility spectrum disorders

Supporting documents:

Minutes:

Joel James MS declared the following relevant interest under Standing Order 17.24A:

 

He has family members who suffer with the condition.

 

The Committee considered the petition and agreed to write back to the Minister for Health and Social Services to share the concerns and experiences of patients and ask her to address the questions raised by the petitioner.

 

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