Respite care!

This situation is ludicrous – and I am running out of steam. In the past 8+ weeks both I and my daughter have had our planned holidays ruined by not being able to book well in advance the appropriate respite care. Yesterday Hazel daughter was considered by the GP as being rundown and her skin complaint has flared up, as never before and now she is off work.

I have had some major home improvements done and had hoped to have Keith in respite. This is another area that causes many difficulties. As Keith was in the building trade he thinks he can still do the work. I have had to hide and or sell his tools, so when he goes shopping he buys some more. This is such an un-necessary strain, and could so easily be avoided.

On advice from our GP we have been strongly urged to develop a relationship with a local Nursing Home with view to ultimately placing Keith there when he needs full time care. This is a certainty due to the prognosis of his disease.

As you and the GP are fully aware staff at any Nursing Home will require training to administer his medical pumps (there are now 2 for each day) and also the stat injection procedure. This is a nightmare as not even Southport hospital have the trained staff – despite:-
*having the specialist nurse from the Walton Neuro unit train them on 4 separate occasions,
* having agreed a patients action plan after difficulties with the pump,
*agreed to have one member of their senior Nursing Team fully conversant with the pump and the medicine (tablets) protocols and available.

Keith was training the staff whilst he was in hospital!!!!!

Yes I get anxious about placing Keith in a Nursing home, as his continuing medical needs are not within the usual realm, and need planning well in advance in order that the professionally trained staff are in place.

The GP informs me that Keith is the only patient that they are aware of undergoing this treatment in this area. As I have taken over the administration of the pump – thus freeing up the District Nurse, they are not truly up to speed. Perhaps our – Hazel and mine – best interests would be better served if we refused to administer the pump, thus ensuring that the District Nurse visited twice a day.

This beggars the questions
‘why should we save the system expense and then not to get our needs met?’

‘if I cannot arrange appropriate respite care to suit holiday plans, do I just leave him and A&E and get on the plane anyway?’

‘I have a holiday planned for April/May 2010 – this was agreed with friends last Easter – how do I know I can go’

There is NO insurance policy which I have been able to find that will cover the expenditure, as insurance companies will claim pre-existing condition – I know I have asked.

My daughter and I cannot go on much longer like this.

Debbie Reardon
Hello Moggie22. I am so sorry that you are having to cancel holidays because time out for carers is important to enable them to provide care to their family members.

Southport hospital certainly should buck their ideas up!! In my opinion at very least you should lodge a formal complaint regarding the service that they haven't offered you. To be 'unable' to administer the pump is ridiculas...they are a hospital after all.a complaint from Keith to the PALS service might be useful too.
You must be soooooo frustrated.Do you have any other family member of friend that could offer to stay with Keith whilst you go away.

I wish I could say more to help, however I hope that you manage to resolve the issue very soon.Please keep us informed of the outcome.

Could you approach your MP? Are you willing to make it a local story to raise awareness and name and shame?

Also, it might be better not to give your real n name here as there have been privacy issues lately.

Good luck