Having support during a care funding battle can make a big difference
…but who can help – and how? Many people feel they have little support during a care funding battle – and yet acting on behalf of a relative who is in care can be exhausting.
When it comes to funding matters, not only do you continually have to find out what should and shouldn’t be happening, but you’re probably also chasing replies from health and social care authorities, writing numerous letters and emails, attempting to hold the authorities to account and perhaps also trying to hold down a full time job and maintain your own finances – not to mention having a life of your own in between.
So who can provide support during a care funding battle?
Family and friends
One of the obvious people is a close relation – a partner, sibling or your son/daughter. Although they may not understand exactly what things are like from your point of view, having emotional support really helps. Friends can play a vital role in this respect too, of course.
Your relative’s GP
You may or may not have good communications with the GP. Some GPs are more aware than others of the ins and outs of long term care funding. You could make an appointment to see the GP yourself and highlight the difficult situation you face. Some GPs are also happy to write/sign a summary of needs to help support your case for funding.
Care home manager, care provider or care workers
If you have a care worker on your side, or a manager from the care provider or care home who supports your application for funding, it can make a big difference. Many people report a tendency by care staff paint an overly rosy picture when asked questions about someone’s care needs; this is of course very frustrating when you’re trying to show how extensive your relative’s needs are! It can be beneficial to speak to the carers and the manager to explain that this is not about the quality of care provided; instead it’s about showing the extent of the underlying needs that require care.
Specialist nurses and therapists
If your relative has some kind of cognitive impairment, Alzheimer’s or dementia, there may be a Community Psychiatric Nurse (CPN) or a Mental Health Team involved in their care. Similarly, if your relative has a degenerative disease such as Parkinson’s or Multiple Sclerosis, etc, there may be a specialist nurse who can provide helpful input into a funding application or appeal. You may also been able to make contact with a physiotherapist or other kind of therapist who has been involved.
In the same way as above, other medical professionals may be prepared to summarise your relative’s specialist needs, for example if your relative sees a neurologist, the neurologist may be prepared to write a letter highlighting the serious issues. Make sure any summary does actually support the specific level of needs you know your relative has, and doesn’t inadvertently dilute it by using language that makes the needs seem less.
Specialist solicitor or other legal adviser
If you need to offload your case and have someone else take it on for you, a specialist solicitor can be invaluable. Equally, if you need advice on specialist matters such as mental capacity, deprivation of liberty or other safeguarding issues (just as examples), a relevant specialist can help hugely.
Specialist funding advisers
If you’re dealing with specific sources of funding, such as NHS Continuing Healthcare, you may need to seek specialist advice. Some former Continuing Care nurses now provide such a service, as do other specialists, who have been through the funding process themselves and now show other families how to do the same.
Coach or counsellor
If you’re finding things difficult emotionally, it may be worth seeking out a professional coach or counsellor to help you. Sometimes it’s easier talking to an independent person than it is to close family. Everyone’s different, of course.
Forums and blogs
There are an increasing number of blogs and online forums about care fees and care funding, including NHS Continuing Healthcare. Some of the big national charities also have forums you can participate in and comment on.
Above all, it’s important to look after you, given how stressful funding matters can be. Get enough sleep, drink lots of water, eat healthily and take one step at a time. At times you may also have to choose your battles and decide how much you can actually take on.
Just having support here and there from people you know are on your side, even if for a short while, can help you stay focused and provide you with the impetus to keep going.
What kinds of people have been able to support you during a care funding battle?