Who cares about carers? We have rights too!

A word from the Chair, Jean Tottie, on Carers Rights Day 24th November 2017

The biggest workforce in dementia care

Carers of people with dementia are the biggest workforce in dementia care saving the state £11bn per year. The majority of those estimated 600,000 carers are women and many have reduced their working hours or given up work completely to do the job of caring to the best of the ability, often with little support or recognition. And let’s be clear: it is a job, one that creeps up on you when you’re ill-prepared for it.

There is ample evidence that caring for someone with dementia is more stressful than caring for others such as a frail older person who has their cognition intact, a fact that is recognised in recent policy. Many of us have done the job willingly with love but have jeopardised our own health resulting in becoming a patient ourselves. Not only that, but we have taken a huge financial cut because of reduced pensions whilst the state receives less tax from us.

Heléna Herklots CBE, Chief Executive of Carers UK, said:

“Looking after an ill, older or disabled loved one is one of the most natural things we can do, but it’s near impossible to receive the practical, financial, and emotional support you need to keep caring unless you know your rights.”

Carers Rights Day 17

Are we recognised and supported? Not nearly enough.

When it comes to caring for someone close to us with advanced dementia the stress increases immeasurably as you take on the huge responsibility of advocating for them. You know them well and better than any of the army of ‘professionals’ who may think they know best. This is when the battle really starts and at a time when we are at our most vulnerable from the stress of daily caring and sleepless nights.

Making the momentous decision that residential care might be the next step is a tough one but with the right support to understand why this might be best for both you and the person you care for can reduce or, in my case, remove any feelings of guilt. My Admiral Nurse was crucial in this process and I can honestly say it was the best decision for both Dad and me. The quality of both our lives was so much improved. That is, of course, after the trauma of finding an appropriate care home, but that’s another story!

Fully funded NHS Continuing Health Care

For many families no one in health or social care tells you about fully funded NHS Continuing Health Care (CHC). If you’re lucky enough to be informed then the application process is the most difficult and complex thing designed to put you off. Clearly in many cases the responsible funder, the local CCG, will interpret the national framework in such a way as to avoid agreeing the eligibility criteria. This is evidenced by the huge disparities across the English CCGs on the number of people being eligible for this funded care – the most obvious postcode lottery to be seen. Do we have a national NHS anymore? I think not.

The irony for me was that having worked in this field at local, regional and national level, and being well informed I had a massive struggle to get Continuing Health Care for my Dad, with appeals and ending up at the Ombudsman.

All the stories I hear from families, ten years later, tell me that the whole situation is much worse. Not only that, but there are illegal practices taking place with families being asked to pay top-up fees despite individuals being assessed as eligible for the funding. This is frightening.

What sort of society do we live in that creates new patients from carers who are doing their best? Not to mention saving the state money, being denied information, care and support and then being put through the most stressful and humiliating application and review system for CHC.

This disproportionately affects people with advanced dementia and their carers, mainly women, and can be seen as discriminatory. Continuing Health Care should be offered not applied for. It should certainly be included in all hospital discharges, as was recommended years ago, and in all care home resident reviews.

The government tries hard to get us to agree its austerity measures. No one wants to see waste but they may just as well agree to fund this care from the outset than waste all the money in expensive staff time dealing with re-assessments, complaints and appeals.

You have rights too!

From my own experience and the many stories that we hear every day from out tide carer network members, it is abundantly clear that carers are not provided with the basic accurate information regarding their right to apply for CHC. Consequently it is then difficult to empower them to exercise their rights.

Against this backcloth, as the Government announces its much anticipated Green Paper on the future of social care, the selected ‘expert’ panel does not include any carer representatives. We have had rights (Human Rights Act 1998) enshrined in our legislation for over seventeen years now, but there is very little evidence that cares of people living with dementia are provided with the basic information knowledge and access to the decision making processes, with which they can exercise their rights as citizens in a democratic society.

It is time to change – this will only come when we enable and empower carers through their personal development, growing their confidence and voice to step up and claim their rights. This is a core aspect of our mission in establishing tide (together in dementia every day), a UK-wide involvement network for carers of people living with dementia.

Join today and let’s put carer’s rights centre stage to drive the much needed change in policy and practice!