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Better breaks, better outcomes

Better breaks, better outcomes



Presentation from Carers Northern Ireland's Innovation in Respite conference, February 2012

Presentation from Carers Northern Ireland's Innovation in Respite conference, February 2012



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  • National organisation – founded 25 years ago Purpose is to promote improvements to short breaks (respite care) through development and dissemination of good practice, providing information and advice to people who plan and use services, working with govt to improve policy and practice.
  • 657,300 carers = 1 in 8 of the population The majority of carers provide care to a parent, closely followed by care to other relatives 60% are female and 40% men. 40% of carers are over 60 years of age – 6% are over 80 years of age - we know that caring commitments increase with age It is estimated there are 100k young people under 18 helping to care for parents or siblings One in five carers we know care in excess of 50hrs a week = 7hrs a day = continuous caring – described by someone to me a being always on red alert With 650k carers = more than all the doctors, nurses and care workers added together, and their contribution is estimated at 10.3 billion = an equivalent of the entire budget for the NHS in Scotland. Note: very poor data on nos. of people in BME communities caring – results of next census will help. I hope these figures illustrate the point that as professionals we must regard carers as people who play an equally important role in delivering the health and care services to our most vulnerable citizens. Without their contributions our health and care systems would collapse. That said, carers don’t want to be professionalised – most probably see caring as just what you do when people in your family or community need extra support – but as the caring intensifies and perhaps overwhelms other parts of their lives – sustaining it becomes increasingly difficult without some outside help.
  • The impact of caring can be immense: • Intensive caring can result in carers being twice as likely to suffer from ill-health as non carers – 27% reporting their health as poor or very poor • One in five give up work to care – financial impact on families can be immense – additional costs of caring/less income) Clear evidence that caring is most likely to be reported in homes with very low incomes – areas of multiple deprivation higher incidences of caring. • Sometimes, the financial impact of caring can be acute (for example, by requiring additional heating, paying for special diets, transport costs to distant services) • Where spouses or partners provide caring support to each other and where one person in the partnership falls ill or experiences an adverse event, this can result in both being admitted to hospital at much greater cost to health and social care budgets. No two caring situations the same – support needs to be flexible to cope with this – caring can change over time (condition of the cared for person or the coping abilities of the carer) which means that needs have to be regularly reviewed. This is a very important point.
  • Scotland’s population is constantly changing. This chart will be familiar to many of you. It visually demonstrates the way Scotland’s population structure has changed over the last 100 years and how it is projected to change – from the pyramid of 1911, to a supertanker by 2031. The important issue for us is the way the population is projected to change over the next 10 years and beyond. I will demonstrate here why this has particular resonance for all of us involved in the delivery of health and social care; and why we need to put this firmly on our agenda now and not simply hope that everything will just turn out right by chance.
  • Government recognises this (not just Scotland, UK and western society) – extract from 5 years Carers Strategy
  • Central govt now has far fewer levers that it can pull on to influence how local authorities spend their money. Sense that we should trust local democracy – central government sets the overall direction /negotiates high level outcomes that need to be acheived in terms of the economy, health and wellbeing, environment – gives Councils/elected officials greater scope to decide locally what services to support or provide, to what level according to the needs and circumstances of their local citizens. This means – where carers are concerened – we need to ensure that carers have a voice in local decision making – find ways of helping carers to connect into these local democratic processes. We need carers to come forward to be involved. The SNP government made the commitment in its latets manifesto to introducing a Scottish Carers Parliament – an opportunity for carers to speak directly to our elected MSP’s and Scottish Government Minsiters. They have also committed to introducing a Carers Rights Charter – this is unlikely to introduce new rights for carers at this stage but will, we hope, help to amplify those that already exists but which have perhaps not been widely implemented.
  • Strategy published in 2010 – 5 years Provides strategic context for carers – reference point for other stakeholders to locate their plans and thereby drive forward change in a more uniform and consistent way Challenging as plan was published in an economic downturn – but existence has arguably protected carers from severest of cuts and has actually increased national expenditure – including, albeit at very modest levels, short breaks.
  • This strategy promotes the following vision... This is not going to be achieved overnight of course – designed to provide central and local govts with a clear sense of direction – expectation that progress will be made towards this vision. But also that every stakeholder will share this vision – vol service provider, social worker, nurse, home carer – will play their part and align their efforts towards this vision. Money won’t achieve this vision alone – attitudes, partnerships, leadership and community engagement.
  • Language is so important – it can help to both reinforce or dispel commonly held perceptions. There is still a tendency to refer to respite beds and this just reinforces the rather impersonal and institutional or hospital associations. Move from respite to breaks from caring or short breaks. We are on a journey – twisty and turny and requires considerable energy to move up the hill. Now that we are moving – can’t risk taking our foot off the gas – so easily roll back down that hill.
  • This quote neatly sums up our starting point – from which we need to measure our progress.
  • Sets out key issues including the purpose and preventative benefits of breaks, the need for more concerted effort to move towards greater choice, flexibility and personalisation of services. Provides case studies of good practice. Although not uniform improvements – the 10k weeks, £4.2M, guidance, strategy is starting to have an affect on how local authorities (mainly) manage and provide short breaks and respite care. More outcome focused planning – use of outcome tools in assessing needs – leading to more personalised solutions rather than one size fits all Innovative developments such as ‘short break bureau’ and vouchers schemes or respite accounts More involvement of carers and service users in strategic decisions
  • ¾ carers report feeling tired and stressed as a direct result of their caring responsibilities – knock on effect on the family With the right kind of short breaks, families will be able to cope and will continue to support and care saving the state money by preventing/delaying need for permanent care Most importantly it enables people to be able to stay connected to their communities, their friends and all the other normal things we do in our lives that we take for granted
  • Let’s not forget that good intentions are not what we’re looking for – the measure of success will be carers and the people they care for experiencing better lives. All very well to talk the talk...carers have understandably become quite cynical about so called new initiatives or more strategies. Challenge for government – national and local – will be to develop the means to measure progress. Check that policy and investment is bringing about real change on the ground. Events such as this can play a role here where carers can connect directly to the local decision makers and practitioners and help to influence the future shape and direction of services. If carers are to be equal partners...that's as it should be. Thank you very much.

Better breaks, better outcomes Better breaks, better outcomes Presentation Transcript

  • Shared Learning from Scotland Innovation in Respite Grosvenor Hall, Belfast 21st February 2012
  • Shared Care Scotland Working together to improve the quality and availability of short breaks across Scotland www.sharedcarescotland.org.ukRight Break, Right Place, Right Time
  • Presentation headingsCaring in ScotlandRe-defining respite careRecent policy developmentsThe road ahead – opportunities and constraints
  • A profile of Scotland’s carersThere are an estimated 657,300 carers in Scotland60% female, 40% men20% over 70 years of ageAn estimated 100,000 young carers20% caring for 50hrs/week or more70% have been caring for more than 5 yearsUnpaid carers save the Scottish economy £10.3 billion/year
  • The impact of caring70% of carers experiencing health problemsOne in five give up work to careMore than half feeling isolated and lonely40-60% of carers have not had a short break
  • The changing shape ofScotland’s population
  • “Carers will play an increasingly importantrole in the support, care and treatment ofpeople with long-term and/or multipleconditions, disabilities, illnesses, includingdementia.”
  • Carer Power!
  • VisionCarers are recognised and valued as equal partners in care.Carers are not disadvantaged, or discriminated against by virtue of being a carer.Carers are supported and empowered to manage their caring responsibilities with confidence and in good health, and to have a life of their own outside of caring.
  • From Beds to Breaks...The Long and Winding Road!
  • Rest Coping EmergencyHospital Relief Institution
  • Turning a corner…2005/6: Care 21 – The Future of Unpaid Care in Scotland – highlights breaks from caring as top concern2007: SNP Manifesto commitments – +10,000 weeks, guaranteed entitlement2008: Scottish Government short break guidance to local authorities, health boards and partnerships2010: Carers Strategy for Scotland, £5m commitment to improving short breaks
  • ...A BETTER DEFINITION? Services provided with the aim of enhancing and developing the quality of life of a person who has support needs and their carer (where there is one), and to support their relationship. The distinctive feature of short breaks is that they should be a positive experience for both.Scottish Govt. guidance on the planning and development of personalised short break services, circular CCD 4/2008
  •  Now £12 million – 2010-2015 Third Sector – service development grants & direct grants to families and carers Managed by Shared Care Scotland on behalf of NCOs 80,000 additional hours delivered so far - 4,500 carers and families benefitting 1% of total breaks provided
  • The principles of the Short Breaks Fund: Funds will support the personalisation agenda, providing early intervention, choice and the tailoring of service provision to meet the needs of individuals; Funding will be allocated where there is mutuality of benefit, i.e. the benefit to the carer and those they care for are clearly defined; Strengthening evidence basis and embedding learning
  • Energy FunChoice FriendshipExcitement Companionship
  • Keeps families together and strengthens caring relationships Prevents or delays the need for permanent careImproves physical and emotional health and well-being Allows people with care needs and their carers to enjoy the same rights, opportunities and aspirations as other peoplePromotes inclusion and independence
  • IT WORKS WHEN...Carers and the people they support: can arrange and plan for a break when they need it have a choice of short break opportunities which are flexible have easy access to support, information and advice and know how to get help if they need it are confident in the reliability and quality of care provided by short break providers have peace of mind that appropriate replacement care will be available if there is an emergency
  • IT WORKS WHEN...People : have a choice of short break opportunities which are flexible have more control over decisions about how, when and where services are provided have information and support to help with these decisions are able to influence the shape and direction of short break provision in their area
  • “Barriers to respite are not always simply financial. Many carers feel nervous about leaving a family member in someone else’s care...the Short Breaks Fund introduced the option gently through the short breaks tailored to them. This has made them more open to considering further use of respite services.” Quarriers Glasgow South West Carers Centre
  • Looking ahead...Opportunities Constraints on progressGrowing recognition of Insufficient leadership, carers planning and managementCross party support – long Varying pace = inequities term goal setting Lack of capacity building inExciting developments in Self information and support Directed Support servicesOutcome focused Financial pressures lead to commissioning fire fighting not fireIntegration of Health & prevention Social Care
  • “We expect the Change Fund to act as acatalyst for driving a radical andinnovative redesign of older people’sservices within a more integrated systemof health and social care in Scotland.” RESHAPING CARE FOR OLDER PEOPLE: CHANGE FUND GUIDANCE 2012/13
  • “However beautiful the strategy, you shouldoccasionally look at the results.”Sir Winston Churchill
  • Shared Care Scotland Working together to improve the quality and availability of short breaks across Scotland www.sharedcarescotland.org.ukRight Break, Right Place, Right Time
  • specialised respite centres sitter services befriending networks breaks in the home of another familysupported holiday breaks residential care homes or nursing homes breaks in supported accommodation day centres and activity clubs self directed breaks supported by vouchers, direct payments or individual budgets