"Palliative care for my wife"

My wife was diagnosed with a rare connective tissue disorder in 2019. We both know there is no cure and it has times of dormancy and activity.

Currently we are in extreme active mode and this causes horrendous pain for my wife which was not managed well, in spite of me trying to get help and being told A&E was the best option. This we didn’t agree with; they are good for RTAs or sudden heart / stroke events but not this rare disease.

We had past contact with a local hospice at the last active session, which I requested to have again, but the GP didn’t give enough information on the referral form and so this was initially declined.

There were delays in communicating this to us and was very upsetting for my wife, autistic children and myself. I contacted carers together for help and managed to get another contact for the hospice and they changed their mind and visited, prescribed some medications and left.

The pain continued with vengeance and I contacted Lucy for help. She came out and assessed the situation and went beyond her remit as an OT which we will be ever grateful for and the cork was released from the bottle and help finally began to happen and within one day a syringe driver was set up to help with my wife’s pain and nausea and we are slowly getting the pain under control.

The District Nursing team are back involved as well which our case was closed earlier this year despite the ongoing leg ulcers my wife has on top of this horrid condition. We had been wrongly advised with the dressings that I’ve been having to do on a daily basis by our GP practice and this as well was so upsetting to find out.

All we needed was proper support and proper advice and understanding which is finally happening thanks to Lucy who has gone beyond and will be forever thankful.

As a husband / carer this has been the toughest few years in my life and this is when you need the support. I know Covid didn’t help, so did our best, but now proper help (which is now happening) is needed to continue.

Thanks again Lucy