"Funding withdrawn to help with care for my husband"

My husband has PSP i.e. Progressive Supra Nuclear Palsy. This terminal, progressive degenerative brain disease, robs people of the ability to walk, talk, see and swallow. There is no cure.

My husband was diagnosed in 2013, but started presenting PSP symptoms in 2011. He had been previously diagnosed with Parkinson's Disease in 2003.

His sight, speech, swallowing and mobility are all badly affected. He needs feeding and medicating, via a PEG tube. He also needs assistance with every aspect of his life. He needs to be constantly monitored for his own safety, as he forgets he cannot walk and has had, (and been saved from), numerous falls with disastrous consequences including a broken spine. Also, he is prone to aspiration pneumonia, chest infections and UTI's, so his health has to be carefully monitored by myself at all times.

Recently, he was assessed for Continuing Healthcare (CHC). It is always difficult to answer questions about the person you love, when they are present and unable to speak for themselves. The questions are of such a personal nature that maybe I was underestimating the severity of my husband's needs out of consideration for his feelings. As it was, after the CHC decision support tool, he was withdrawn, which with him, is always a sign of being depressed.

CHC was refused, but instead, he was awarded a jointly funded package of care. As my husband has a "Drawdown " pension, and some savings, we assumed we would have to pay for the other part of his funding.

A month later, he got a letter saying that CHC had changed their mind stating: -

"It has been identified that there are no healthcare needs which require funding by NHS Sheffield".

Luckily, I had not entered into a contract with a care company on the assumption that we would get part funding, because at the time, my husband was in hospital with pneumonia and a UTI. and I was busy travelling and visiting each day.

I asked for the reason for the withdrawal of shared funding to be sent to me in writing. This did not happen. Instead, I got a phone call explaining that as I was giving the PEG feeds, administering his medication and monitoring the situation, my husband did not need financial help from the NHS.

I am almost 73. I have had breast cancer twice, which resulted in lymph gland removal. This has caused some weakness in my arms and hands. I have long- term arthritis in my back and spondilitis in my neck. I also have Reflex Syncope, which means I have had blackouts due to low blood pressure unless I take care of myself and eat regularly (not easy, when being a nurse, carer, constant watchman plus doer of all other domestic duties).

The CHC Team did not ask me about my health. In fact they made it worse, as after that phone call, I was so distressed, I broke out in what the doctor called, "Stress eczema", so now, I too need extra medication!