Westminster Hall debateWestminster HallThursday, 26 March 202613:30

Outcomes for patients with Ehlers-Danlos syndrome and craniocervical instability

Backbench debate (separate chamber, no votes)

This Westminster Hall debate focuses on Ehlers-Danlos syndrome (EDS), a connective tissue disorder, and craniocervical instability (CCI), a serious complication where the skull base becomes unstable. The debate will examine patient outcomes, diagnosis, and treatment challenges for people living with these conditions, which are often poorly understood by the NHS.

EDS and CCI affect thousands of UK patients, many of whom face significant diagnostic delays and limited treatment options. This debate raises awareness of a rare disease group that struggles for recognition and appropriate medical management within the NHS, potentially influencing how these conditions are prioritised in clinical practice.

Health & NHS

MPs most likely to speak

Josh NewburyLabour Party

Cannock Chase

Debate sponsor/lead member (calendar Members field)Voting record

Dr Caroline JohnsonConservative and Unionist Party

Sleaford and North Hykeham

Shadow Health and Social Care — portfolio topic overlap (35pts); Spoken on health (10 times, 20pts); Known positions: health: opposed, health: questioning, health: neutral (30pts)Voting record

Natalie FleetLabour Party

Bolsover

Spoken on health (2x, 22% of debates, 40pts); Known positions: health: questioning (10pts); Recent topic activity (0 in 30d, 4pts); Regular WH attender (9 debates, 5pts); Convergent signals (4 sources, 1.3x)Voting record

Anneliese MidgleyLabour Party

Knowsley

Spoken on health (3x, 27% of debates, 40pts); Known positions: health: supportive (10pts); Recent topic activity (0 in 30d, 3pts); Regular WH attender (7 debates, 5pts); Convergent signals (4 sources, 1.3x)Voting record

David Burton-SampsonLabour Party

Southend West and Leigh

Spoken on health (4x, 40% of debates, 40pts); Known positions: health: supportive (10pts); Recent topic activity (0 in 30d, 3pts); Regular WH attender (8 debates, 5pts); Convergent signals (4 sources, 1.3x)Voting record

Outcomes for patients with Ehlers-Danlos syndrome and craniocervical instability

MPs most likely to speak

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