Supporting carers
Approximately 12% of general practice patients are carers. It is extremely important that GPs are aware of the issues these patients have to cope with and provide appropriate support.
The Royal College of General Practitioners (RCGP) has launched a campaign to encourage GPs to support carers. A range of materials to educate and help GPs on carer issues is provided on the RCGP website at www.rcgp.org.uk/carers. To support this, Headway is providing GPs with information specifically relevant to brain injury carers.
There are over 1 million brain injury survivors in the UK and many of these people have wives, husbands or other family members who act as unpaid carers, often on a full-time basis. These carers can face a daily struggle to cope with the stress of their role and the struggle can be a lonely one. Headway's own research has revealed the impact of caring on people's psychological and physical health, as well as the shocking lack of support people receive. Some of the key findings from our 2012 carer survey included:
- 60% of brain injury carers feel they do not receive adequate support in their caring duties.
- Just 7% of brain injury carers receive help from social workers in their caring duties.
- Only a quarter (27%) of brain injury carers have received a carers assessment.
- Half (49.5%) of survey respondents were not aware they were entitled to a carer's assessment, despite the legal requirement for local authorities to ensure carers are made aware of their right to an assessment.
- Just 24% of brain injury carers are satisfied with their health. Conversely, a worrying 8% are 'very dissatisfied' with their own health.
- 18% of brain injury carers rate their quality of life as 'poor' or 'very poor'.
- 59% are showing signs of clinical depression with 21% in the severe or extremely severe range.
Assessment and support
The RCGP also reports that around 40% of carers experience psychological distress or depression at some time as a result of their caring duties. GPs are in a position to improve this situation. The RCGP recommends that GPs routinely screen carers for depression and it would also be appropriate to screen for stress and anxiety. This can be fairly easily done using the reliable and valid DASS-21 scale.
The Zarit Burden Scale is also useful for indicating the burden experienced by carers. A few screening questions taken from these scales (downloadable at the bottom of the page) can give an indication of the need for further professional support. It may then be appropriate to refer to local counseling services, such as IAPT therapists. Counsellors, therapists and chartered psychologists in private practice are available in most regions and directories can be found using the links below.
Some people may benefit from self-help programmes, either on their own or in conjunction with a therapist. Cognitive behavioural therapy is an extremely popular and successful approach, which is recommended by NICE for treatment of depression. Many IAPT services employ cognitive behavioural therapists and there are a lot of online self-help programmes available. Many of these programmes are NHS approved and you can find information and links from NHS Choices . Further links are available at www.getselfhelp.co.uk/links2.htm.
All carers are entitled to a carers assessment from their local social services. Sadly, as shown in Headway's survey results, too many do not receive an assessment. GPs can help to improve this situation by making sure carers are aware of their rights to an assessment.
Although social services are legally obliged to inform carers of their right to an assessment, there is currently no legal obligation to provide services. Therefore, even after an assessment many people do not get adequate help. It is therefore especially important to inform carers of support groups and organisations they can freely access in their area. These services are hugely beneficial as the most important thing for carers is support and feeling like they have someone to lean on and talk to.
Meeting other carers
Meeting other carers in similar situations, or just having someone there to listen, can be just as useful as professional therapy.
Headway's groups and branches provide carer services and support groups and the Headway helpline provides information, signposting and a listening ear (see links on the right). It is important to make sure patients are aware of Headway and also of the carers organisations listed below.