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I should have joined ages ago! - Page 2 - Carers UK Forum

I should have joined ages ago!

Tell us a bit about yourself here.
Many thanks for such a lovely warm welcome. Image

Re the Prader-Willi, it is a very difficult situation as our daughter cannot have any unrestricted access to food at all, all our cupboards are locked and I had to buy a special fridge lock from America as there was nothing suitable available in the UK.
Unfortunately it is a struggle that we are not winning, she is now 116kg and is 5 feet 2 inches, her Diabetes is also uncontrolled although she is on 4 injections per day and also Metformin.

I have had a good look around the forum and have seen that a lady has lost her son from Diabetes..I hope me writing the above is not upsetting for her.

Another subject which might cause a few comments is the fact that we are fighting to get a specialist Prader-Willi facility for our daughter to go to. She wants to move away from the family home and we have looked at options available, they are not suitable for her needs.

There are few specialist placements for those with PWS but the one she wants to move into is the one that she had her weeks respite at, an hour away from home.

I must admit I tend to think we have gone from one extreme to the other, where living in the community was not even an option, to classing all specialist "homes" as institutions and as such, the very worst possible route to take.

Obviously we disagree with that but can understand up to a point why people feel this way.

Right..I'm going to go and have a wander around the forums. Image
As long as the "institution" has good community links and promotes independence as far as is possible for the individual, then there is no reason to say no - other than cost, of course. But the fact is that most facilities would not prevent your daughter from having free access to any foods because "she has made a choice" and they may not accept that this is an issue of diminished capacity due to obsession.

Many services would also struggle to manage the diabetes successfully, and it's ok for those services to be "confident" that they can: you have to be very clear in your own mind that they are not simply "talking the talk", but also "walking the walk."

Lots of searching questions helps. If they struggle to answer them, they don't have the knowledge to do the job.
Welcome from me too.

I used to work in residential care for adults with learning difficulties. We had one chap with PW and he eventually moved into supported accommodation and although he has his moments (don`t we all) seems to enjoy a good work/leisure balance. I left twelve years ago, but still visit a couple of times a year and exchange christmas cards with the residents who were there when I worked in the home.

Hope you enjoy the forum.

Take care
I lost one of my sons to Ketoacidosis in July 2009.Don't worry about saying anything that might upset me, (as Audrey has said).
I wish people would be more open about their worries and fears with Diabetes. Since Rhys's death, I have been stunned to find that children and young people are losing the fight with diabetes, the world over. Since Monday I have heard of four more deaths.
Bereaved families want Governments to recognise this fact,and that the death rate seems to be increasing, but many families would prefer to leave their heads in the sand, than realise that their biggest fear could come true. I had been fighting for four years for support for Rhys(he suffered clinical depression too),with no success from the medical profession.It gets pushed under the carpet. Paramedics could not treat him for DKA, but did treat him for illegal drugs(just in case he had taken any, even though there was no history of this and Pathology afterwards confirmed that he had never taken opiates.
My elder son also has Type 1 Diabetes,as well as Downs Syndrome. His day care staff and respite care staff allowed him unrestricted access to sugar and sweet foods,and told me I was over reacting when i pointed out that it could be fatal.(they have given me a wide berth since my younger son proved to them how easy it is to lose a life to diabetes).He now goes to a privately run day care centre, where the staff have attended training courses with my son, to enable them to support him better.
Good luck with what you are hoping for. Don't worry about upsetting me. The only people who did that were the Drs and nurses who would not listen when I begged for support. xx