ANNOYANCE!!!!

Generally I am a relaxed sort of person, but sometimes I get a little riled.

I have a grandson who will be 8 years old this summer. His name is Terry. He was born with cerebral palsy. He is also quadriplegic and has epilepsy. His mother has been his sole carer as her husband could not cope with the fact that he has disabled son, and they have since divorced. They have a daughter who is coming up to 10 years old and my daughter has a son aged 14 years. (there were issues between son and stepfather which are now ‘resolved’ hmmm).

Terry went into Kings College Hospital for a routine operation the beginning of December 2011, it was to change the ‘gastro’ site through which he had been fed for the last few years as he does not have a swallow reflex, more of that later!

After the ‘op’ things went a bit awry. Dear Terry had to have many surgical interventions and also further surgery which also involved opening his abdomen completely (imagine a cross cut into your abdomen – north/ south/ east/ west!). There were also infections that he caught and have been cured. Over the months that he was in Kings he was well looked after in their intensive care unit. We can only have praise for the care that they gave to Terry. Amazingly enough Manuka honey was used for the healing process… We can only thank Kings for the care that they gave to this little chap of ours.

During his stay at Kings it was discovered that Terry had a problem with his throat. It seems that the back of his throat is totally relaxed which is why he has had problems swallowing. Yes, he is now being fed directly into his stomach (but now bowel) but any other naturally produced fluids were being directed to his lungs as well as stomach. He used to get so many lung infections that he needed extra antibiotics for the infections. My daughter, his mother, would ask for this problem with his throat/lungs to be investigated and she was always shrugged off as a paranoid mother…. Oh you know what I mean.

To help this little chap he has had to have a tracheotomy. That is a breathing tube to help. As he now has a breathing tube he needs care 24/7….. having the tracheotomy has solved the problem of the lung infections, he is so much better!!

Therein lies the problem, Terry now needs 24 hours a day care, 7 days a week, 52 weeks a year . Nurses are needed to help overnight.

My daughter is in a small 3 bed house with a teenage son and pre-teen daughter.

Terry has recently been moved to his local hospital which is nearer his family. So much better for all concerned. My daughter now would dearly love to have him home but there is a problem, and what a problem it is proving to be…..

She has a small 3 bed house. Terry now needs 24 hour care with carers coming in to help. He used to share with his older brother, upstairs, but that is not sensible. Terry is putting on weight (at last!) and there are problems lifting him. He is not tiny after all and a hoist is now needed. It seems that ‘the powers to be’ have decided that Terry could go to foster carers that have the necessary equipment in place and that his mother can go visit him there…….but they will not arrange for the equipment to be put in place in his own home!!

OK, so what the fuck is going on here please??? (excuse the language)

As a grandmother I am angry.

I did send an email to no. 10 but you are limited to the amount of letters (including spaces and punctuation) and eventually got a standard reply.

I will send the above to no.10, The Daily Mail, Telegraph and all and sundry (with a little extra added) until I get a satisfactory response...

It is the cost of all the agencies involved!!!!

Just had a thought.... will contact his other grandparents - don't hear a lot from them!!!! About time they got involved....