'I highlighted problems Lupus patients in Wales are experiencing because of the lack of specialist care'

MS for North Wales

Almost two years ago, the all-Wales bereavement support charity ‘2 Wish Upon A Star’ presented a petition to the Senedd Petitions Committee, calling on the Senedd “to urge the Welsh Government” to ensure that support is immediately accessible to bereaved parents and families who have unexpectedly lost a child or young adult aged under 25.

The petition, which collected 5,682 signatures, was debated in the Welsh Parliament last week and, speaking in its support, I noted that bereavement support for these families in Wales “is all provided by organisations like 2 Wish Upon A Star or Hospices like Tŷ Gobaith Children’s Hospice near Conwy”.

As Chair of the Cross-Party Groups on Hospices and Palliative Care and on Funerals and Bereavement, I have worked with 2 Wish Upon A Star, whose founder, Rhian Mannings, told me that sudden death is the forgotten death in Wales and that although the charity has effectively become a statutory service in Wales, working with every Health Board and every Police Force, they received no statutory support. As I said, let us heed the Senior North Wales Police Detective who told me “North Wales Police has definitely seen the benefit of the services 2 Wish Upon a Star provide”.

Questioning the Health Minister, I highlighted problems Lupus patients in Wales are experiencing because of the lack of specialist care for this autoimmune disease and asked her to respond to calls by charity ‘Fair Treatment for the Women of Wales’ for the Welsh Government to improve care for those with Lupus and Rare Autoimmune Rheumatic Diseases, and by the Rare Autoimmune Rheumatic Disease Alliance for a properly commissioned specialist centre for rare autoimmune rheumatic diseases in Wales, supporting local hospitals to deliver better care.

I Chaired the Welsh Parliament Public Accounts and Public Administration Committee, which included evidence sessions on Cardiff Airport; visited the ‘Covid-19 Bereaved Families for Justice Cymru’ drop-in event in the Senedd to discuss their first-hand experiences of the pandemic and learn more about why they are calling for a Wales-specific COVID-19 inquiry; and, as Acting Chair of the Cross-Party Group on Fuel Poverty and Energy Efficiency and as Chair of the Cross-Party Autism Group in the Senedd, had online meetings with the Secretaries of each to discuss the agendas for our forthcoming meetings.

Other engagements included BT’s Senedd climate change ‘Sofa Summit’, a visit to Ty Gobaith Children’s Hospice and a catch-up meeting with Transport for Wales’ North Wales Development Director.

If you need my help, email Mark.Isherwood@senedd.wales or call 0300 200 7219.