"Transition to adult services"

There had been lots of planning meetings with multiple agencies involved due to my son's profound multiple learning disabilities and complex medical needs.

Everyone involved was committed.

No words can describe the emotional feeling of having to plan for your son's future when every morning you did not know if he would still be alive!

Yes I live my life every day with this not knowing how I will find him. 

Yes there had been the correct people round the table.

What worked very well was - social work enabled staff member from adult day centre to attend days at my son's school and for a staff member from his school to support my son to attend adult day centre. In my opinion this was 5 star and the best that anyone could possibly receive. 

This was of huge support to the staff of the service at his adult day centre he was transitioning to. 

This provided time for training for life saving medical equipment, time to get to know my son, pick up on vital signs to change to his health and for them to respond in the correct manner... help save his life.

Within 4 months of transferring over to adult health things started to fail.

Health professionals who had been involved in transition meetings at children's hospital started to disappear and those who would replace them stated they could not provide the service that was needed and had been agreed.

Learning Disability team have very useful tools to use for when the person attends hospital appointments and for stays in hospital.... but I feel they are ignored! I also feel that the parent carer is ignored, or we are seen as being challenging! Only because we have the knowledge & experience for how best procedures are carried out.

In my opinion, adult health has a long way to go to catch up with paediatric.

I now have no medical support at the end of a phone, something I always had when my son was with pediatric team - even though he has very specific needs in terms of medical equipment at home.

I feel that people like my son are best treated at home and everyone would agree.

Continuity is vitally important to people like my son and thankfully his LD nurse has remained the same from the start of transition planning and is still in place to this day.

In my view, the service from adult health was a failure before covid, now it is horrendous.

District Nurses - not straightforward ordering supplies.

I think there should be a lead person in health to coordinate between the specialists in health my son sees, this should not be me.

No one asks me how I feel or do I want to take on more responsibility regarding health needs.

His life has been in my hands for many years and I can not take on any more! But I have no choice.