My son is 21 and has Prader Willi Syndrome and Autism. Since becoming an adult he has lost all his health care. He eats compulsively (PWS), is type 2 diabetic, suffers from psychotic episodes, skin picking, rectal picking, obsessive, compulsive thinking..He is excluded from Learning Disability Services because his IQ is 70 (cut off 69), other services say he is too complex. We have been asking for health services since 2022 and every meeting (and there have been many with the ICB) just suggest another meeting/asks for more information. Our next meeting with the ICB is a HOLD meeting and we have been told in advance that there are 'no guarantees of anything' This also impacts on his Social Care package and move into supported living. Don't know where to go next.
My son can't get health care. : My son is 21 and has... - Mencap
My son can't get health care.
Have you tried to get help from
Thank you for the reply - yes, we have an advocate from pws.co.uk - helpful but unfortunately unable to force the health trust to provide health care.
speak to your doctor about all his health and difficulties he has and all your concerns Giving details of when it started and whether still happening. Write a list of what you want to say and say why you need his help : health care and supported living and go over his teacher's assessment of him or anyone interacting with him/carers or yourself and areas he has difficulties still. Your doctor will be able to advise you from your needs of his and who to contact next to help you. Also it may be advisable to talk to Social Worker or Citizen Advice Bureau
Hi, thank you. We have an excellent Social Worker and information from the GP. Endless referrals that are turned down. The Trust simply refuses to provide. At the moment we are in the middle of the complaint.
This seems to me to be discriminatory, a breach of the Equality Act, because he’s getting poorer-quality service as a direct consequence of his diagnoses. The figure of 70 they gave for his IQ should not be a reason to refuse help, because no IQ test is so accurate as to be reliable as a definitive indicator of need or eligibility. It seems to me that someone probably was asked to write a report stating that his IQ was 70. I think if you keep pushing and complaining - involve your MP and/ or local councillors perhaps, the Equality Commission, or maybe MIND, maybe move towards seeking judicial review - eventually they should come up with something. He’s clearly in distress, and it must be extremely distressing for you to be attempting to support him with inadequate advice and backup. We are living under a disgusting system that puts carers under extreme pressure and neglects vulnerable people. My heart goes out to you and to him.
My son is 26years old has autism with learning difficulties 
care fcilities for our son 31
Deputyship for disabled son
My son
