Amphion

I quit a fantastic job as Mum has Alzheimer's. It was an easy decision

After three months being sedated in a care home, Mum couldn’t even lift her head. That’s when I knew I had to look after her

Much of the support Dad received was superb. Without our local GPs and the district nursing team, his pain and anxiety would have become intolerable in the weeks approaching his death. Without them he would have died in hospital, not at home – even though it was not quite in his own bed as that had been replaced by a medical model.

But given declining resources and increasing demand one needs to ask: what is the simplest way for information on financial support to be communicated by health and social care professionals to the relatives of those with long term care needs?

It strikes me that there is a way to easily pass on information about allowances, reductions and funding. Last year the Guardian carried a story on John’s Campaign, a fight to give carers the right to stay in hospital with their loved ones with dementia. As a result, many hospitals now offer a carer’s passport to relatives of dementia patients.

Perhaps as part of this, local authorities and the NHS could add a document highlighting the various reductions in council tax available, as and when the patient comes home. Some people with dementia or a mental impairment are exempt from the tax, and there are possible banding reductions for use of equipment or a wheelchair.

Clear information on respite care, attendance and carer’s allowance, and possible grants for home modification, would also go some way to making sure carers know what they are entitled to.

My mum wasn’t made aware of any of this when my dad was discharged from numerous hospital admissions. She found out some information from friends, and stumbled on other help by chance. It shouldn’t be that way.

Such documentation could also highlight the patient’s right to be assessed for NHS continuing healthcare, a right that the Alzheimer’s Society campaigns for, even if the chances of it being awarded are painfully slim and riddled with complexity.

Of course, such documentation shouldn’t only be delivered in a hospital setting: information packs could also be provided to relatives at memory clinic assessments, where dementia is most likely to be initially confirmed, thus triggering certain allowances.

Documentation should be plain, simple and printed. There is too much reliance on older people using the internet (one might question how many older people feed back to the NHS Choices hospital review portal, for instance).

Many “hardworking families” (to use political parlance) fear losing their savings and home in financing care. It seems appropriate that as much as possible is done to inform and simplify information for them so that their taxes will, if only in a small way, help towards the cost of providing care at home.

SOURCE: Sid Wheeler, The Guardian