to think this is disgusting and wrong

[threeOrangesocksmorgan]

here
surely the man and his family should have had a say before this was put in place .
how can it be right?

Yes but we give relatives a direct number to contact the ward and dont always mention that if we ring them , that number wont come up , but number withheld will . I had a relative who we had been madly trying to get in contact with , deny all knowledge of our calls , until i mentioned it would come up as number withheld , then he said he had ignored then as he thought it would probably be telemarketing calls .

It doesn't matter if the named contact was a family or not. The contact would make sure the family knew about the dnr.

No it doesn't make a difference in terms of expected communication, I was just pointing out that it isn't that uncommon for an adult with learning disabilities to either not have any family contact, or none who are available to be consulted with.

Oh stop trying to make out crappy nursing doesn't exist. Even the head porter told us how he had walked through a ward and saw a man had fallen out of bed. He mentioned it at the nurses station on the way by, to have the sister say, 'oh that's not my ward'. And she did fuck all.

" The contact would make sure the family knew about the dnr"
the dynamics are rarely that straight forward

If the family were interested in the man's care, and visited him regularly, then I'm sure they would know who his contact was and would be keen to be updated on his care. It would be a different situation if the family weren't interested.

Got to disagree with Cailin. MIL spent 6 weeks in hospital earlier this year. DH and DBIL visited at least 6 nights per week between them. I and other family members popped when we could. We were told only as a throw away remark and towards the very end that a DNR had been marked for her. There had been no consultation with any family member and far more horrifying was they hadn't discussed it with MIL who definitely had capacity to understand and consent/or not.

I havant read whole thread but someone way back said - mencap or some other body supposed to be representing people with LD needs to contact all trusts across the country to ask how many people with LD are marked down as DNR.

When you are fighting prejudice and deep seated ignorance of conditions like DS, you need an equally vigourus body to stand up to these orgs, and push the case of people with DS.

They are being failed in nealry every tier of processes in society. Where are the charities supposed to champion them? They have the resources and the access to legal help etc...

What was the condition of the patient's heart.

Well part of Down's Syndrome is Ccongenital heart disease

I know far more Down Syndrome People without cogenital heart defects than with