Heather Goodare discusses some of the issues associated with being a patient advocate and carer for vulnerable patients.
As a patient advocate (since 1990 in England and then from 2003 in Scotland) I have met many patients, most of whom have been over 50. Older patients may be vulnerable and need protection – either because they are unable to care for themselves or because others are not doing this properly for them.
In our area there is a particular role for community mental health services; the NHS waiting list for both counselling and psychotherapy is around six months, but community services at low or no cost are also available. The problem is that GPs don’t seem to know about them, or don’t refer patients to them (perhaps they don’t trust them), and those suffering from anxiety or depression need help in accessing such services.
There are also phone-lines such as Age UK (0800 169 6565) and The Silverline Scotland (0800 470 8090) that should be signposted for those living on their own. We need joined-up thinking, particularly now that we are attempting to integrate health and social care. The join should be seamless.
Of course we all know about another key issue: ‘bed-blocking’. Preparing care packages for those elderly people who should be discharged from hospital is a challenge: but it must be faced. A friend who was admitted to hospital for bowel surgery in November 2013 has still not returned home. Her stay in, first, an acute surgical ward for three months, instead of the scheduled week, then a ‘holding unit’ for a year, then an acute psychiatric ward for three months under section, and finally a nursing home for the care of long-term elderly psychiatric patients, where she is now, was prolonged because an appropriate care package could not be organised, physiotherapy not offered, and alterations to her home not completed. She walked into hospital originally; she is now permanently in a wheelchair.
It is particularly difficult for those patients who have no relative who can act for them to sort out the home care. Social workers are over-stretched: there is no easy answer, but we must not give up. Perhaps we need a new class of voluntary workers who might be able to take on the job of ‘buddying’ patients who have no nearby relative to act for them.
Being an advocate – the Edinburgh Health Forum
In 2007 a group of lay people formed the South Edinburgh Health Forum, when the South Edinburgh Public Partnership Forum (representing the public to the Community Health Partnership) was suspended. We are now the Edinburgh Health Forum, after the recent closing down of both the South and North Public Partnership Forums (which were statutory bodies). We represent mainly older people, and between us have personal experience of cancer, stroke, diabetes, glaucoma, blindness, podiatry, autism mental ill-health including psychosis, and caring for the elderly.
We contribute to a number of healthcare-related groups in Edinburgh and more widely in Scotland, including the Scottish Health Council and SIGN. Better care for older people is very much on our agenda, though it is not our exclusive interest.
Elderly and isolated
Our main issue at the moment is that while a good deal of energy, both on the part of healthcare professionals and Edinburgh City Council, is expended on programmes of ‘healthy living for older people’, few seem to take account of the real needs of people living at home in isolation, with physical and sometimes mental disabilities that prevent them from going out and taking part in various activities. The tendency for the organisers of these activities is to base their administration on websites, and the problem is that many in this age group cannot access websites: they don’t even have computers. This inability to join in exacerbates their isolation.
How can GPs help?
GPs really do have a responsibility here. Our suggestion is that whenever a consultation takes place, particularly with someone who is disabled or isolated, the doctor should try to squeeze in time for a general enquiry about how the patient is feeling. It might be cost-effective to schedule a double appointment, particularly with elderly people on an annual visit to check medication. Do they have visitors? Neighbours who care? Would they like to make use of a voluntary service that might offer companionship? Could someone help by taking them out for a walk or shopping, perhaps?
These community services do exist, but often don’t reach the people who really need them. Also, booking the service usually requires computer skills: there has to be a way of someone else offering to manage these resources for the patient. So the GP needs to have up-to-date information about community services, in a format that is suitable for the older age group, particularly the disabled, for example printed information in a large font.
A personal issue for me,relating to my husband, disabled after a stroke. is polypharmacy for the elderly: are all their medicines really necessary? Do the benefits outweigh the harms? Quite simply, do we take too much medicine?
Being a carer
As a carer for my husband, I find that my own physical problems, mainly stemming from progressive late effects from radiotherapy for breast cancer in 1987, together with the usual afflictions of old age (arthritis, osteoporosis), mean that I have to rest more often than I used to.
However, I know from my work as a counsellor with a cancer support group (in England, for 13 years) that carers often suffer more than patients. So when I became a carer myself I resolved to continue with my own outside interests as far as possible – playing the violin, going to yoga classes, and so on. I rely on a good friend to come once a week to do crosswords with my husband: she loves them, and I do not, and I am very grateful to her. But my cares and responsibilities are nothing compared to those of the disabled self-carer, who frequently gets left out of such discussions. Again, volunteers may be able to fill the gap to some extent.
To sum up, however, GPs are a life-line: we couldn’t do without them, they earn our gratitude, and in Scotland we are also very lucky to have free personal care. Long may it continue!
The GMC has guidance, resources and signposts to help doctors deal with issues related to the care of older people. Find more at Better Care for Older People. This month we’re taking a look at older adult safeguarding. Resources in this month’s release aim to raise awareness of these new requirements and provide support in this area of care.