11. INFORMATION AND ADVICE
The purpose of this chapter is to show why it is important for carers to have the right information and advice at the right time and to set out actions to improve provision in this area.
11.1 Carers frequently say that they would like the right type of information at the right time, depending on their particular circumstances. They also want up-to-date information, as sometimes they are provided with information on services that is out-of-date. Specialist health professionals can play an important role in providing condition-specific information that can help carers to understand and deal with difficult or challenging symptoms.
11.2 Carers often need assistance to navigate in and around both statutory and non statutory services and organisations.
"I would like to urge other carers to get support for themselves although it was years before I realised I was a 'carer.' Never be discouraged or disheartened. If you're determined and look ahead, there is help and plenty of information out there. I have found that the National Schizophrenia Fellowship (Scotland) has been a great support and I would urge others to pluck up the courage to go to a carers' group."
This person cares for her son with schizophrenia.
11.3 The national carer organisations and other organisations, including condition-specific organisations, provide a lot of information for carers through their publications and websites. Local carers centres have a crucial role in providing a wide range of comprehensive information and advice, including carer information packs tailored to different caring situations, benefits advice and advice on health and well-being.
11.4 Moreover, many other Third Sector organisations such as Alzheimer Scotland, Chest Heart and Stroke Scotland, the Stroke Association and the Parkinson's Disease Society are providing a wide range of information and advice to carers. MECOPP (Minority Ethnic Carers of Older People's Project) is the lead agency for the joint NHS 24, Health Scotland and NES website 'Health in my Language' which offers patients and carers access to information in community languages.
11.5 It is necessary to maintain a focus on the provision of timely, accurate and good quality information and advice not only when someone is new to caring but also whenever information and advice is needed. We have already discussed the role of healthcare and social care professionals in identifying and supporting carers and have set out actions in previous chapters. These professionals have a key role too in providing information and advice.
11.6 Moreover, the Carers Information Zone being established by NHSinform will have an important role in providing information to carers.
11.7 This zone, which is driven by the needs of carers, will:
- Provide a central accessible online resource of specific information for carers, ranging from practical support for looking after someone to caring for their own health and well-being; and
- Signpost carers to the most appropriate source for further information, support and guidance.
ACTION POINT 11.1
In 2010, the Scottish Government will continue to work with NHS inform on the development of its Carer Information Zone. Once fully developed, NHS inform will continually review the online service to ensure that it remains up-to-date, accurate and relevant to carers' and young carers' needs.
11.8 The Scottish Government launched Care Information Scotland ( CIS) earlier this year. This service, managed by NHS 24, consists of a website service and confidential telephone helpline, 24 providing comprehensive up-to-date information on all aspects of community care for older people. CIS covers issues such as: how to get a care needs assessment; care options, including care at home and care homes; and how much care costs. CIS also provides information on local services and how to access them, and links to advice and support services. There is a 'Support for Carers' section in the website, providing general information and contact details for local services and support organisations.
11.9 CIS is available to all and is mainly being used by the friends, family and carers of older people. Carers are advised of the help available to them, in addition to the possible service options for those they care for.
11.10 As NHS 24 operates the CIS and will run the Carers Information Zone in NHSinform, the appropriate links are in place. Both CIS and NHSinform are new and will need to firmly establish the operation of their core services before considering developments. The potential for extending the services in order to provide a comprehensive helpline for all carers will be considered, along with possible alternative options.
ACTION POINT 11.2
By December 2011, the Scottish Government will gather and review the available evidence and scope the potential for a Scotland-wide carers' helpline and the options for providing it, including extending the service for carers offered by Care Information Scotland.
11.11 Many carers say that to receive information from GPs and other healthcare staff on the condition of the person they care for would help them in their caring role. They believe that they would be better equipped to care for their relative if, for example, the GPinvolved them in the consultation or appointment with the cared-for person.
11.12 Family members do have the right to be involved in decisions about the healthcare of people who lack capacity, balancing the patient's right to confidentiality with the principle of carer involvement. There are a number of useful sources of information on this important ethical issue, a few of which are listed below. 25
11.13 With regard to patients who do not lack capacity, or who do not have a mental disorder, or who are not a child, there are ethical issues about carer involvement and the right of the patient to confidentiality. No one else can make a decision on behalf of an adult who has capacity . However, it is good practice for a GP or other healthcare professional to check whether a patient needs any additional support to understand information, to communicate their wishes or to make a decision. This may include support from a relative, partner or carer or another person close to them. There is evidence to suggest that when carers are provided with appropriate information and engaged in the care planning, the outcomes for the patient and carer are enhanced. The overriding principle is the need to consider the best interests of the patient and carer.