How much disability is needed

[albertajune]

My 80 something brother in law has a rare for of cancer, caused by asbestos. It is in the lining of his lung and can't be treated. He fwas given about a year of survival but is now in his second year.
A nurse used to visit weekly to drain off fluid but that is now the job of my sister, who is very capable. Recently, the lung had a partial collapse and blocked the drainage tube. The affected his breathing dreadfully as fluid was building up. He had to go to the hospital for treatment, where 3pints of fluid was drained off.
They live near Stowmarket in Suffolk and had to get to the hospital in Cambridgeshire.
Neither of them drive and his appointment was for 8am. My sister applied for help with the journey from their local council as his breathing was so laboured. They had been told by Alderhay Hospital, where he was going, that he should qualify for a car to drive him there.
His application was turned down because he can walk. They set off at 6.15am that morning to travel via busses and trains. He could of course have got a cab at the cost of £89 each way.
I wonder who made the decision that if you can walk but not breathe, you have no disability.

[Mercedes]

June all I can say is that whoever made that decision needs shooting. I'm really sorry to hear how bad your brother in law is and surely just because he is able to walk shouldn't mean he isn't entitled to this help. It's just disgusting. Can you contact someone like their local councillor or MP or even their local newspaper to shame these so called 'experts' into seeing how badly they are treating him?

[LittleBrownFrog]

it beggars belief!

[rhubarb93]

Disgraceful!
If he needs to go again, I'd suggest asking for a higher level of management until he gets what he needs, and is clearly entitled to.
In my experience, those who shout loudest get most help. I expect they are decent folk who probably don't like to make a fuss, but there are times when you have to.
Failing that call 999 and get an ambulance.

[albertajune]

Unfortunately, my sister and brother in law are very quiet, don't want to be a nuisance type of people. They live nowhere near me. They are Suffolk, I'm Berkshire, that is why I feel so useless at not being able to help.
He has the illness but she has the worry, of having to shoulder the knowledge that he is reliant on her and she feels she is letting him down.
We do hear about such things now all the time but it is rarely on our doorstep. I will try to give advice over the phone but that's all I can do.
I put the subject on here to get it off my chest as I felt so angry that they could be judged by someone who just ticks boxes.

[Maggie1]

The only thing I can suggest is to contact Alderhay and ask THEM if they do a car service. My sister had the same problem with Addinbrookes. They did a service but it was just for that patient which was her husband. However if your sister is his CARER then its different.

[mrs boodles]

That is disgusting, it is so hard to get any help nowadays if you are disabled.

[albertajune]

The only thing I can suggest is to contact Alderhay and ask THEM if they do a car service. My sister had the same problem with Addinbrookes. They did a service but it was just for that patient which was her husband. However if your sister is his CARER then its different.

I'm so glad that you replied Maggie. I did in fact give the wrong hospital that he is attending. It is in fact Addenbrookes who are treating him. I did say Cambridgeshire but got a bit confused at which was which hospital. Now that the 3pts of flluid has been drained, he is feeling much more comfortable, so may not have to go back there until something else occurs. I will pass on your suggestion for future visits. Se is his only carer so should be able to go with him, having to perform the draining and keeping the hospital informed as to how much she drains off etc.

[Maggie1]

It makes me so cross when the hospitals don't let you know of the facilities. We have the same problem with OH's Mum. She's 91 and has to go 4 times a year to Weston Super Mare from her house which is about 7 miles. She basically has been told the same thing. She has had several ops and told to get a taxi home.
Because of one person giving her the knowledge, she contacted Red Cross who told her the telephone number of the hospital voluntary services. She gives a donation and when she gets an appointment in the post she just rings them.