“…The condition is not classed as an ultra-rare disease, yet it is rare enough that any drug to treat it will struggle to meet NICE’s cost-effectiveness criteria.The family constantly have to raise enough money to pay for each round of treatment.”
Record by topic
- Assisted dying98th of 3929.0
- NHS waiting lists213th of 5436.0
- Mental health491st of 8906.0
- Palliative & end of life care191st of 5406.0
- Public health & prevention260th of 7006.0
- Hospital discharge / bed-blocking45th of 1453.0
- Cancer387th of 6413.0
- Rare diseases81st of 2073.0
Also active on assisted dying
What they’ve said
“I beg to move, That this House has considered the matter of rough sleeping among families with children. I place on the record my co-chairship of the all-party parliamentary group for ending homelessness.”
Rough Sleeping: Families with Children · 2026-03-11 · Read on Hansard ↗
“It is a pleasure to serve under your chairmanship, Mr Efford. As co-chair of the APPG for ending homelessness and the co-sponsor of this debate, I thank all colleagues who have attended; our new Minister, my hon.”
Ending Homelessness · 2025-10-21 · Read on Hansard ↗
“…oversee every application, with oversight from psychiatrists, social workers and lawyers; the requirement that assisted dying can only be discussed with patients in the context of all their end-of-life care and treatment options; mandatory training for doctors and panel members on detecting coercion; and the creation…”
Terminally Ill Adults (End of Life) Bill · 2025-06-20 · Read on Hansard ↗
“…The perpetrator had four Prevent referrals and was known to mental health services, and nobody joined the dots. Will the Security Minister ensure that whatever else the inquiry into these tragic and preventable deaths examines, it looks closely at how the agencies talk to each other and assess threats together? Agencie…”
Southport Attack · 2025-02-05 · Read on Hansard ↗
“…The Forbury Gardens perpetrator had been referred to Prevent four times and was known to mental health services. It will be important to those families in Southport that lessons are learned and acted on in a timely way.”
Southport Attack · 2025-01-21 · Read on Hansard ↗
Contributions reproduced under the Open Parliament Licence.
Related media coverage
Recent UK press coverage of their topics — not necessarily quoting them directly.
- Accrington woman died while waiting 47 weeks for mental health talking therapyLancashire Telegraph
- Hotter summers, hidden harmsCentre for Mental Health
- Free fair to connect jobseekers with support servicesHerald Series