10. RANGE AND TYPE OF SUPPORT
The purpose of this chapter is to act as a link to the subsequent chapters on the range and type of personalised support to be made available to carers. The key issues raised at engagement events with stakeholders are set out here.
10.1 The carer's assessment/carer support plan should be the gateway to support and services. However, carers who do not have a carer's assessment/plan should also be able to access support even if the carer's assessment is the preferred route to support.
10.2 There are many forms of support available to carers over and above that provided, in some cases, by other family members, friends and neighbours. Carers who are new to caring often say that the priority for them is to have information and advice about the condition or illness of the person they are caring for. They may require a different type of information as the illness or condition changes.
10.3 In the delivery of support, it is important to take into account that a person's caring situation can change quite dramatically, even in a short space of time. People can continue to be carers, in a different way, for example, when the person they are caring for moves on to independent living or into a care home. Caring at end-of-life is particularly difficult and the carer may need support after their relative dies.
"I felt alone and in the dark when mum died. I loved caring for mum. But a carer's life starts to move on when their caring journey ends. I have now found my own identity as this can be lost when caring. My carers' centre supported me to see the light. I am carrying on using my voice and experience in supporting carers."
Rosemary, who cared for her mother with dementia. Rosemary's mother sadly died in February 2010.
10.4 Carers frequently report the difficulties they encounter and the barriers they face in their day-to-day caring role. Some say they have benefited from support which is then withdrawn or that there is a disjointed approach to the delivery of support from different professionals. Carers themselves often have to use their limited and precious time and energy to facilitate the connections to be made amongst the various professionals.
"Our daughter has complex health and developmental needs. We had to come to terms with the fact that life was going to be very different for her and for us as a family. Services became disjointed when she was four years old. Getting assessment and support was an uphill struggle. We co-ordinate our daughter's support and we want the disjointed approach to end. The battle is exhausting for both sides."
Brett and Maggie, who care for their young daughter with a rare genetic syndrome (Cornelia de Lange Syndrome).
10.5 Carers often experience disjointed approaches and a lack of joint working at times of transition for example, when their child with a learning disability leaves nursery or school. The transition from children's to adult social care services can be particularly traumatic. Some carers have described this like "falling off the end of a cliff."
"Planning for transition can be spectacularly pointless if there is no follow-through. A multi-disciplinary group agreed that all of my daughter's support should continue as her needs would not change. But after transition to adult services, nothing continued and I was left to start things up again as best I could."
Anne, a lone parent who cares for her adult daughter with profound learning disabilities and who is physically dependent.
10.6 Equally, change can be managed well. Anne, above, also said:
"The move into supported accommodation was managed very well. I was consulted about my daughter's care plan and social activities, equipment and furnishings. We met her flat mate and new care workers well before the move. A difficult and anxious time was made less so by a sensitive response to my concerns and a clear and continuing commitment to my daughter's well-being."
10.7 Early diagnosis of a condition, syndrome or illness helps would-be carers to access information and advice at the earliest opportunity. For example, the Scottish Government's continuing national health target on improving early diagnosis of dementia recognises that this is key to those with dementia and their carers in accessing the gateway to early post-diagnostic support.
10.8 Caring can impact heavily on a carer's physical and/or mental health and well-being. Access to emotional support through a carers centre or provided by a condition-specific organisation or through the GP can help. Some carers need more intensive interventions such as counselling.
10.9 Good advice and person-centred training on moving and handling can help with the physical aspects of caring. So too can having the right services in place for the cared-for person to lessen the physical burden, which can sometimes be extreme.
10.10 Many carers benefit from short breaks or respite. This is linked to emergency planning - a rapid response service - when there is a need for such a service. Carers should be supported in proactive planning for emergencies and unexpected events.
10.11 Carer training is important. If carers have access to good quality training, they are better equipped to deal with many different aspects of caring and to continue in their caring role.
10.12 Housing and housing support is an important issue for some carers, especially in ensuring they have the right type of accommodation to suit the needs of the family. Access to the right equipment and adaptations when needed is necessary.
10.13 Access to telecare services for the cared-for person can also provide peace of mind, reduce stress and lessen the physical aspects of caring.
10.14 Some carers, especially the most vulnerable, benefit from independent advocacy support to help them in many different ways, including supporting them in their dealings with health and social care and other professionals.
10.15 Many carers want support to remain in work as work provides an income and it is what people generally do, or want to do. Others want to access work, training or Further or Higher Education. Other carers who cannot work due to age and/or level of caring responsibility would like support to have a good standard of living and not experience financial challenges due directly to the costs of caring.
10.16 Carers want to have an identity beyond caring which can be found in employment, volunteering and leisure opportunities.
10.17 Carers appreciate the support provided by carers centres and by a wide range of voluntary organisations and often say they would like them to be better funded and resourced. The sustainability of these services and ability to cope with an increasing demand is an important issue, and one which should be addressed by funding provided, where possible, by local authorities, Health Boards and others.