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I am a Functional Neurological Disorder (FND) sufferer and have been since 2023, however there are people that have suffered far longer than me, and we all feel as if there is absolutely no support from the NHS unless you push for it, and travel miles to find it. It is simply not good enough.
React
Members can read every reason.
NHS-funded rehabilitation to be made more accessible for FND patients
I want the Government to make NHS-funded help for FND more widespread so that it can be accessed in more places, such as in Milton Keynes
Review treatment of ARFID and access to NHS eating disorder services
In many cases, support from NHS eating disorder services is not given to people with ARFID. We think this support is crucial and should be mandatory. If left untreated, ARFID can be life threatening. People can miss out on education and life events, and can lack energy to do basic daily activities.
Fund more NF1 specialists and regular monitoring and support for NF1 patients
Provide funding for more Neurofibromatosis type 1 (NF1) specialists. Currently only two locations provide care. Monitoring is limited to yearly checks. My husband was diagnosed in 2018, had no follow-up, his NF1 tumour became cancerous (MPNST). He sadly passed on Christmas Eve 2025.
Review NHS cancer treatment protocols
We want a review of the NHS cancer treatment protocols, including awareness and use of drugs not commonly used for cancer treatment but repurposed (so called off label drugs), and supplements.
Review support provided to autistic parents involved in SEND tribunals
We think autistic parents are currently denied equal access to justice when representing their children in the Special Educational Needs and Disability (SEND) Tribunal, and call on the Government to review this as autistic parents deserve equal access to justice when advocating for their children.
I am a Functional Neurological Disorder (FND) sufferer and have been since 2023, however there are people that have suffered far longer than me, and we all feel as if there is absolutely no support from the NHS unless you push for it, and travel miles to find it. It is simply not good enough.
React
Members can read every reason.
NHS-funded rehabilitation to be made more accessible for FND patients
I want the Government to make NHS-funded help for FND more widespread so that it can be accessed in more places, such as in Milton Keynes
Review treatment of ARFID and access to NHS eating disorder services
In many cases, support from NHS eating disorder services is not given to people with ARFID. We think this support is crucial and should be mandatory. If left untreated, ARFID can be life threatening. People can miss out on education and life events, and can lack energy to do basic daily activities.
Fund more NF1 specialists and regular monitoring and support for NF1 patients
Provide funding for more Neurofibromatosis type 1 (NF1) specialists. Currently only two locations provide care. Monitoring is limited to yearly checks. My husband was diagnosed in 2018, had no follow-up, his NF1 tumour became cancerous (MPNST). He sadly passed on Christmas Eve 2025.
Review NHS cancer treatment protocols
We want a review of the NHS cancer treatment protocols, including awareness and use of drugs not commonly used for cancer treatment but repurposed (so called off label drugs), and supplements.
Review support provided to autistic parents involved in SEND tribunals
We think autistic parents are currently denied equal access to justice when representing their children in the Special Educational Needs and Disability (SEND) Tribunal, and call on the Government to review this as autistic parents deserve equal access to justice when advocating for their children.
