13. SHORT BREAKS (RESPITE)
The purpose of this chapter is to be clear about the importance of flexible, personalised short breaks provision, leading to better outcomes for carers and the people they care for. We set out actions in support of the further development and sustainability of short breaks, including the allocation of a £1 million grant to the voluntary sector.
13.1 The terms 'short break' and 'respite' tend to be used interchangeably. Some carers and service users prefer the term 'short break' or 'break from caring,' signifying a break from the routine.
13.2 The term 'respite', on the other hand, can imply the 'relief from a burden,' thereby giving the wrong impression of the caring relationship. It can also be associated with institutional forms of support or hospital-based stays.
13.3 Whilst many people prefer to use the term 'short break' or 'break from caring,' the term 'respite' should not be disregarded just yet as this more traditional term is still very much used and recognised. Indeed, some carers use the term themselves.
13.4 Carers say that access to personalised, flexible short breaks provision is crucial. Short breaks help to recharge batteries and sustain carers in their caring role. They can be a lifesaver for some. Carers can have a life of their own through the provision of suitable short breaks.
13.5 Many carers want planned breaks from caring. Carers also need to be able to mix and match different options, at different times and for different reasons. There should at all times be an emphasis on choice, flexibility and availability of break when needed.
13.6 It is also important to recognise that some groups of carers, such as BME carers, may have particular difficulties in using mainstream short break services.
13.7 Many carers do benefit from short breaks which meet their needs entirely. It gives them a good-quality break from the stressful demands of supporting someone with a disability or long-term condition or dementia or another condition or illness. It makes life easier for the carer (and also for the person with care needs).
13.8 The break might be during the daytime or overnight. The break might be for a couple of hours or for much longer. It might involve the cared-for person having a break away from home, thus benefitting the carer in that they have time for themselves. Or the carer might have a break away, with services being put in place to support the cared-for person. Some people want to have a break together, with additional support to make this happen. Sometimes the service is provided in the home for the cared-for person, with the carer having time to do something themselves for a couple of hours during the day. This latter type of support is provided by Crossroads Caring Scotland and other organisations and by local authorities.
"We have two kinds of short breaks for our young daughter. She goes to an activity group once a week at Sense Scotland Touchbase and has great fun. She has planned overnight short breaks at Quarriers Countryview which is a big adventure for her. Both services have well-designed facilities with workers who have the expertise to support our daughter. We found out what was on offer ourselves and are delighted with the way things have worked out over the last two years. Short breaks can change as she gets older but we always want them to be enjoyable for her. We can relax knowing that she is happy."
Brett and Maggie, who care for their young daughter with a rare genetic syndrome.
13.9 The Scottish Government and COSLA recognise that there are some very good initiatives and developments at local level in the provision of short breaks. There are examples of improved consultation with carers on short breaks provision, better allocations systems resulting in improved equity of access based on assessed need, and the provision of new facilities. Some short breaks provision provides early intervention and will result in cost savings to the health and social care system.
13.10 Over the last few years there has been progress but there needs to be more - the provision of short breaks is high on the list of carers' priorities. It is not possible to know exactly how much need is unmet. This may be due in part to a lack of systematic data collection and analysis of this information. But it is also due to the fact that carers can already benefit from breaks, for example, due to a direct payment paid to the cared-for person, but with no requirement to record the break provision in any system. Carers may also benefit from voluntary sector services such as befriending provided to the cared-for person, but again this might not be known to the local authority.
13.11 Concerns about short breaks provision, include:
- Only being offered a few hours short break each week, with people in similar situations in other areas being provided with more hours;
- Lack of accessible respite in rural areas, with the respite hours being reduced because of time spent travelling to the service;
"I was very grateful to get 3 hours per week from a care provider (Crossroads) to look after my husband whilst I travelled a round trip of 68 miles to enjoy a swim or a coffee and chat with a friend."
Ann, who cares for her husband with complex health problems and limited mobility.
- Lack of suitable respite, choice and flexibility;
- Inconsistency in the approach to a needs assessment;
- Poorly managed service transitions, particularly during the transition from children's to adult services, often resulting in a loss of support at a critical time;
- Lack of involvement with carers and service users in planning and preparing for their short breaks; and
- Concerns about replacement care in times of emergency.
13.12 There are many challenging issues around the provision of short breaks. People, quite rightly, would like to be able to access a variety of short breaks provision to suit their needs.
13.13 Some provision, for example residential and overnight, is expensive to run, but some people require this. Very tough decisions are being made at local level about how best to provide and fund short breaks in light of resourcing and other pressures. The Scottish Government too, in experiencing these pressures, still aspires to take forward the Manifesto commitment of a minimum entitlement to respite for those in greatest need, but will reassess the timescale for delivery. Progress is being made with the Concordat commitment to deliver an additional 10,000 respite weeks by 2011.
13.14 In light of these challenges, all partners need to consider how best they can support carers to have time out from caring, and develop innovative solutions based on a better understanding of people's different needs and circumstances. For example, children with disabilities can benefit from participation in youth clubs, after-school clubs, sports clubs and holiday activity programmes.
13.15 Local authorities, with partners including NHS Boards, the voluntary sector and carers, should use their combined resources and expertise in creative ways to plan for the development of more flexible, personalised short breaks provision.
13.16 The Scottish Government received a number of good practice examples of innovative short breaks provision These included the Short Breaks Bureau operated by Falkirk Council which benefits service users and their carers with an assessed need for short breaks. This may consist of a rolling programme of short breaks in a preferred facility, occasional breaks, or emergency placement if and when required. Falkirk Council can target service user groups, for example, mental health users, to increase the uptake by this group. North Ayrshire Council runs a short break and holiday service for people with learning disabilities, complex needs, challenging behaviour, physical disabilities or autism. These examples and others are included in the separate Good Practice document.
13.17 Some carers whose caring responsibilities have reduced may volunteer by helping out in another carer's home to give them a break from caring. People who have no caring responsibilities volunteer in this way too. This type of volunteering support is usually provided to a friend or relative.
13.18 There are also examples of volunteers supporting people they do not know initially. This type of volunteering is usually facilitated by organisations such as Volunteer Development Scotland, Community Service Volunteers and Befriending Network Scotland. The latter will launch its dementia training toolkit later this year to enable volunteers to tailor their befriending support to the needs of those with dementia and their carers.
13.19 There are differing views on whether volunteering by people who are not the carers' relative or friend, should be promoted to help provide respite. One view is that volunteers can usefully support people who do not have intensive care needs in order to allow the carer a break, whilst others believe there are issues around training, support, trust, disclosure and so on.
13.20 The Scottish Government, Shared Care Scotland and others believe there is merit in exploring the volunteering options further as part of citizenship and community capacity building, and will build on the initial discussions we have had with a range of organisations.
13.21 The Scottish Government has recently approved a Public Social Partnership pilot in part of Argyll and Bute to set up a respite bureau for carers offering a menu of respite services. The bureau will commission adult respite care services and provide a brokerage service connecting the needs of carers and service users with the menu of respite services available.
13.22 This is one of ten two-year pilot projects across Scotland seeking a new way of working between the public sector and the Third Sector. Argyll and Bute Council and Argyll and Bute Social Enterprise Network, the two partners in the project, have appointed the British Red Cross as Third Sector Partner and Preferred Provider. Shared Care Scotland is also supporting this pilot.
13.23 There are further examples of short breaks bureaus (see the Falkirk example). Shared Care Scotland has set up an Action Learning Set currently working with 9 local authorities to help take forward short break bureau developments. Ideas are shared to see if some of the administrative and funding challenges of setting up a bureau can be tackled. The bureau helps to connect people with services that best meet their particular needs and situation.
13.24 It is very important that emergency respite care is available where, for example, a carer has to deal with an emergency and needs respite at short notice. There are various means to provide such support. Inverclyde Council is using Concordat monies to fund the local carers' centre to provide sitter services either on a one-off or ongoing basis. This service is widely publicised in order to target 'hidden carers' as well as those already in touch with the carers centre. The Council also has a Rapid Response Team, which has a home care team to provide emergency respite.
13.25 There are a number of Action Points as below, all relevant to young carers too:
The Scottish Government, in allocating £1m to the national carer organisations in 2010-11 for short breaks provision, will monitor progress towards the provision of innovative, personalised, flexible provision which meets the needs of carers.
ACTION POINT 13.2
In 2010-11 the Scottish Government will work with Shared Care Scotland and others to disseminate the findings of the short breaks research and to consider the development of further actions in light of the findings. In particular, Shared Care Scotland seeks to use the research findings to support partners to improve the local strategic planning and commissioning of short break provision.
ACTION POINT 13.3
For the duration of this strategy, the Scottish Government will undertake to strengthen the NHS role as a strategic partner in supporting the provision of respite care. The Scottish Government will facilitate a high level meeting with NHS Boards to consider current practice, with a view to identifying factors which would help promote/support joint working in this area.
ACTION POINT 13.4
For the duration of this strategy, the Scottish Government with Shared Care Scotland and other partners will encourage and support the continued development of more effective ways of providing short breaks through learning networks and, where possible, the setting up of demonstration projects.
ACTION POINT 13.5
From 2011, the Scottish Government will work with a range of organisations to explore the potential to develop short breaks provision through volunteers.
For the duration of this strategy, the Scottish Government will work with a range of organisations to explore the potential to develop emergency respite and to support carers with emergency planning.
ACTION POINT 13.7
The Scottish Government will continue to publish beyond 2011 official statistics on respite provision and will work to improve the quality and consistency of this information, in order to achieve National Statistics status for this data source and publication.
ACTION POINT 13.8
By July 2012, the Scottish Government will reassess the timescale for delivery of the Manifesto commitment to a guaranteed annual entitlement to breaks from caring for those in greatest need, taking account of progress in the delivery of short breaks through the other Action Points in this chapter.