This must have been a hugely emotional time for you. Now that your daughter is in a safe place, with a round the clock team of nurses, please take a day off. I do not make that suggestion lightly. Think of somewhere about an hour’s drive from home that you like, have a coffee, lunch, take a walk, but most of all be very aware of how stressed you are and how tense your body is right now.
Have an evening meal out, go home, snuggle down in bed, with the phone off the hook, and get some sleep, safe in the knowledge that you can do this at last.
Just to keep you guys updated. She has been in hospital a little over 2 weeks and no progress has been made in finding community nursing support. I made a complaint to the health trust and a “Putting things right” process has started. after a meeting today it was agreed that an MDT meeting be arranged, this is because no solution can be found to support my daughter with rectal prolapses whilst awaiting surgery. So unless there is a breakthrough and a solution found she could be spending months on a hospital bed awaiting the surgery; the surgery needs to be performed over the border in England and the specialist that has accepted the referral has a very long list.
I think I am going to need to find a solicitor the specialises in NHS and Social Care, ideally education too but thats another story.
Over 3 weeks on a hospital bed and still no progress.
Consultant told a nurse to inform me its a six month wait for the operation and asked if I had any female family members or friends that could support her in the community whilst she waits for the op. Obvioulsy he had already been told im on my own dealing with this and no community nursing support can be found either.
So looks like she will be staying on a high dependancy bed for up to six months, obviously im now worried her mental health is going to take a nose dive and becomes a real challenge for the nursing staff to keep her safe.
I was telling someone recently that the funding cuts will mean suffering. I care for my son with a physical impairment. He is a L1/L2 paraplegic due to open spina bifida. In our case, it is more about equipment that could make a difference. But even that is hard to find. I applied to the LA for a blue badge and have started the DLA appeal process too. I understand how you feel.
Have you requested a carers assessment or not? They will do a financial assessment as well. Good luck! Call the on call social worker for help. My son also is on meds but for different reasons. Also find out about what financial support you qualify for and start claiming. Have you ever had a break? When was the last time you had me time? It is time for a carers assessment definitely. If you need help filling out the forms, ring Citizen’s Advice tomorrow and ask to speak with a benefits advisor. Or you can use their website Benefits - Citizens Advice