Lincolnshire JSNA: Unpaid Carers

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1 What do we know? Summary Lincolnshire JSNA: Unpaid Carers The number of carers nationally and locally is set to increase over the next decade and by 2037 it is anticipated that the number of carers will increase to 9 million. Local and national evidence indicates that carer s health and financial position is affected by their caring role. Carers are not routinely given information on where to go and how to access support and information. Many carers continue to care without the support they are entitled to and risk breakdown of the caring role. Facts and figures There are 6 million carers in the UK approximately 1:8 of the population - latest research puts the value of unpaid support at 87 billion a year, 52% higher than in Every day another 6000 people take on caring responsibilities equating to 2million every year. Out of the 15.2 million people of working age (16 to 74yrs) 1.6 million of these provide some time of care. According to the 2001 census there are 66,000 carers in Lincolnshire that is 10% of the population. 25% of these are caring for 50 hours or more per week, that equates to just over 16,500 carers. Geographical distribution of carers assessed in Lincolnshire 2009/10 indicates that the largest number of carer s live in East Lindsey and the lowest numbers of carers live in Boston Borough; these figures are consistent with the overall population figures with East Lindsey District being the largest population of Lincolnshire at 140,800 and Boston Borough being the lowest at 59,000. Nationally there were 114,000 children (just over 1 per cent) aged 5 to 15 years providing care in 2001, with 9,000 of these (8 per cent) caring for 50 or more hours a week. According to recent BBC research from November 2010 it is estimated that are 6000 young carers in Lincolnshire. As with adult carers the highest number of young carers known in Lincolnshire come from East Lindsey District followed by South Kesteven District which is consistent with adult carers. However Boston and Lincoln City have a much higher number of young carers compared with adult carers. This might be due to the young carers awareness raising activity and local schools awareness and support of young carers in these areas. Lincolnshire JSNA: Unpaid Carers 1 of 11 May 2011 (v1)

2 District Young Carers known to Action for Young Carers in 2009/10 Carers assessed in 2009/10 Population Estimates Source mid 2009 population estimates/gp registrations LPCT October 2010 East Lindsey District 23% 26.1% 140,800 South Kesteven District 15% 17.5% 131,200 North Kesteven District 8% 16.9% 105,700 South Holland District 12% 10.7% 84,100 Lincoln City 16% 10% 85,500 Boston Borough 16% 6.8% 59,000 Locally the largest caring group is those caring for their spouse or partner at 65.5% followed by 15.5% caring for a parent and 12.7% caring for a child with a disability. For young carers locally the largest caring group is those caring for their mother at 43% followed by 18% caring for their brother, 11% caring for their father, 8% caring for a sister and 3% caring for their grandparent. 17% of these cared for more than two people National Provision of Unpaid Care by Age and Sex in the UK in 2001 Around 6 million people (11 per cent of the population aged five years and over) provided unpaid care in the UK in April While 45 per cent of carers were aged between 45 and 64, a number of the very young and very old also provided care. There were 114,000 children (just over 1 per cent) aged 5 to 15 years providing care in 2001, with 9,000 of these (8 per cent) caring for 50 or more hours a week. Around 44,000 people (5 per cent) aged 85 and over provided care, with around half of these (51 per cent) spending 50 or more hours a week caring. Lincolnshire JSNA: Unpaid Carers 2 of 11 May 2011 (v1)

3 Census 2001 data show that there are 61,051 young carers aged in the UK, with 11,341 of these (one fifth) caring for more than 20 hours each week and 4,406 caring for more than 50 hours per week that is 7% of all carers in this age group Local provision of unpaid carer by age in Lincolnshire Age Range Age of known Young Carers in Lincolnshire in 2009/10 5 to 7 yrs 10% 8 to 9 yrs 12% 10 to 11 yrs 21% 12 to 13 yrs 23% 14 to 15 yrs 21% 16 to 17 yrs 12% 18yrs 1% Age Range Age of known Carers in Lincolnshire in 2009/10 18 to 25 yrs 1.1% 25 to 34 yrs 1.8% 35 to 44 yrs 6.9% 45 to 54 yrs 15.1% 55 to 64 yrs 24.0% 65 to 74 yrs 20.3% 75 to 84 yrs 16.6% 85+ yrs 3.8% Nationally the age group with the largest proportion of people who provide care is in the fifties. More than one-in-five of people aged are providing some unpaid care. Almost a quarter of women in this age group are providing some care compared with 17.9 per cent of men. Lincolnshire JSNA: Unpaid Carers 3 of 11 May 2011 (v1)

4 The main age range of carers receiving a carers assessment in Lincolnshire is consistent with these national figures in 2009/10 24% of carers assessed were aged 55 to 64 years. Nationally under the age of 65 a larger proportion of women than men were carers. The number of hours of care given was related to age, with a higher percentage of older carers providing 50 or more hours a week. The proportion of carers providing this level of care rose sharply from age 65. Nationally around 44,000 people (5 per cent) aged 85 and over provided care, with around half of these (51 per cent) spending 50 or more hours a week caring. Local data shows a lower number of male carers accessing carers assessments in Lincolnshire: 34% of those receiving a carers assessment in 2009/10 were males to 66% of females. There are an estimated 229,318 adult carers aged in the UK, 5.3% of this age group in the population. Local data from carers assessments show a lower number of younger carers accessing carers assessments, just 1.1% of carers accessing a carers assessment in 2009/10 were young adult carers. Many of the people providing care do paid work as well. Of the 15.2 million employees aged in full-time work, 1.6 million are providing at least some unpaid care - 144,000 providing 50 or more hours a week. For full-time workers providing 50 or more hours care there is a larger proportion of men. Trends The number of people caring is set to double in the next 40 years equating to 13million carers in the next decade, 3 out of 5 people will eventually end up caring. On average another 6000 carers will take on a caring role each day in the next decade Targets 17.49% of carers received a carers needs assessment or review and a specific carer s service, or advice and information in Lincolnshire by March 2010 Local Indicators supporting the above indicator Decrease the waiting times for carer assessments, Target 28 days Increase the number of carers with a Carers Emergency Plan, Target 800 carers per year Increase the benefit take up by carers and their cared for in Lincolnshire, Target 1million by March % of GP practices in Lincolnshire engaged with the Lincolnshire Carers Partnership by November 2010 Performance The Lincolnshire Carers Partnership 6 monthly Performance Reviews focus on the 7 outcomes carers said are important to them. The outcomes are:- Lincolnshire JSNA: Unpaid Carers 4 of 11 May 2011 (v1)

5 Healthy In Control Valued Able to have a life of their own Respected Included and involved Confident in the future The reviews give carers the opportunity to hold health and social care and partners to account, set and monitor targets and ensure the carers strategic plans are on track. Number of carers receiving needs assessment or review and a specific carer's services, or advice and information during 2009/10 Aged 65 and Over Providing Unpaid Care Performance monitoring Quarter 1 Quarter 2 Quarter 3 Quarter 4 Target 4 Target 8 Target 12 Target 16 Actual 5.55 Actual Actual 12.9 Actual Since the Lincolnshire Carers and Lincolnshire Young Carers Partnerships were established in April 2008 there has been a steady increase in request for carer s assessments. The work of the partnerships has helped to raise the profile of carers through a number of activities for example the Carers Communication and Media Campaign, the Carers Information Pack, the launch of the Carers Emergency Response Service and the carers newsletter. The implementation of Carers Trusted Assessors has given carers a greater choice over who supports them with their carers assessment and increased the number of carers support workers supporting carers with their assessment. Lincolnshire JSNA: Unpaid Carers 5 of 11 May 2011 (v1)

6 What is this telling us? Summary The role of carers is rarely chosen. It is often thrust upon individuals as a consequence of a sudden illness, a disability or accident of a family member, partner or friend or the birth of a disabled child. Carers often remain hidden and fail to access support available to them as many do not recognise themselves as a carer. Work must continue to raise awareness of and the profile of carers to ensure carers know how to access the support available to them and have information about the illness and disability of the person they care for at an early stage. Professionals in health and social care must acknowledge this requirement and respond appropriately. Information and effective support is critical. Poorly coordinated planning and a lack of information and support leads to stress, low self esteem and frustration and thus onto ill health for carers. This ill health is often ignored as carers do not have the time or back up to look after their own needs. This cannot be good for the carer and risks the breakdown of care with the subsequent need for intervention by health and social care. We must continue to invest in carers trusted assessors so carers have easier access to support and a carers assessment. Local views Local Carer Views The Lincolnshire Carers and Lincolnshire Young Carers Partnerships commenced April 2008 to ensure what carers say is important to them is taken forward in a co-ordinated approach with carers at the heart of planning. All the work taken forward is done so with carers as equal partners leading the way. Over 150 carers are involved in a variety of methods linking into either one of the main partnerships or the working groups, each of which focuses on a specific activity. Below are examples of the working groups:- The Carers Newsletter Group The Carers Training Partnership The Carers Employment Group Hidden and Hard to reach Carers group Better Links with GP s Group Former Carers Group etc Lincolnshire JSNA: Unpaid Carers 6 of 11 May 2011 (v1)

7 The activity of the partnership is based on the 7 outcomes carers said are important to them and is monitored through 6 monthly performance reviews. Carers Views of the Lincolnshire Carers Partnerships Carers now have a voice and are listened too The carers partnership is like a breath of fresh air This is the first time I ve been part of something like this Carers Views of the Carers Assessment process 75% of carers supported said the support they received made them feel more valued as a carer, and 79% said they felt more respected. 75% of carers said the support they received made them feel better/healthier in themselves A lot of pressure has been taken off me since having the carers assessment I think the carers assessment process is one of the easiest I have gone through to get help I have had help from the Carers team and I had my first holiday in 25years and this has made such a difference Carers Views on the Carers Personal Social Services Survey % of carers said they looked after themselves and 91% stated that their general health was fair, good or very good. Despite reasonably good health, the caring role left carers feeling stressed, tired, short-tempered and with disturbed sleep. 70% of carers regarded themselves as having a disability or long-standing illness to cope with. 88% of carers said they had at least some control over their daily life. 54% of carers received most of their support directly from the Local Authority (Lincolnshire Carers Team or Area Social Work Teams). In terms of the skills required for the caring role, 88% of carers felt they were in control of the situation and did not need any training. In general terms, 86% of carers felt they had some encouragement and support in their caring role from friends, family, health and social care professionals but over half agreed that they would benefit from more. 88% of carers said they spent at least some of their time doing the things they enjoyed, with 85% of carers having at least some social contact with people they liked. 79% of carers can access the basic services they need such as going to their GP, library or dentist. 21% of carers of working age are not in employment because of their caring role. Lincolnshire JSNA: Unpaid Carers 7 of 11 May 2011 (v1)

8 Only 25% of carers have been able to take a short break (1-24hrs) With regard to the treatment of the person cared for, 86% of carers felt involved and consulted by the GP and 79% when dealing with health professionals at hospitals. Almost 100% of carers generally felt safe in their own home. 45% of carers said their caring role had caused some or a lot of financial difficulties. National and local strategies National Strategies include: Recognised, Valued and Supported: next steps for the Carers Strategy (2010) Carers at the Heart of 21st century families and communities: a caring system on your side, a life of your own (2008) Caring about Carers a National Strategy for Carers (1999) Local Strategies include: Lincolnshire Strategy for Carers Every Carer Matters; The Next Three Years Moving forward: Greater independence, choice and control for carers Lincolnshire Strategy for Carers Current activity and services Locally Lincolnshire Carers and Lincolnshire Young Carers Partnerships and working groups Carers Support Services (information, advice, 1:1 support, Carers assessments, Carers groups etc) Carers Employment, Education, Leisure and Learning scheme (EELL s) Carers Discount Scheme Virtual Carers Centre Carers Emergency Response Service Carers GP Project Young Carers Card Carers Multi-agency Outcome based assessment tool/carers trusted assessors Carers Personal Budgets Carers Benefits Advice Lincolnshire JSNA: Unpaid Carers 8 of 11 May 2011 (v1)

9 Nationally Carers UK - Princess Royal Trust for Carers - Carers Direct - Tel Key inequalities According to national research it is estimated that 300,000 people in the UK who care, unpaid, for ill, frail or disabled relatives may be missing out on the financial support they are entitled to. This amounts to 843 million in unclaimed Carer s Allowance every year, which could be providing basic financial support for carers. Carers UK s research in 2008 showed that caring can take a massive toll on carers health, finances and ability to live their own lives. Many carer s financial situation is so difficult that they are struggling to pay even basic bills. 52% had cut back on buying food, 65% of carers were in fuel poverty and three in four carers (74%) had difficulty paying essential utility bills. Over half (55%) were also in debt as a result of their caring responsibilities. Financial problems appear to be directly related to the amount of care provided. 70% of those caring who were for 24 hours a day found the costs of caring a drain on income, double the rate for those providing lower levels of care, i.e. the more care provided the more likely a carer was to be in financial difficulty. The impact of caring in financial hardship can also be detrimental to the health of carers. Seven out of ten worried about their finances, and six out of ten believed this had an effect on their health. Carers are over twice as likely to have mental health problems if they provided substantial care. Data from the Census in 2001 found that carers are a third more likely to be in poor health than non carers The combined effects of poverty and ill-health can lead to isolation and social exclusion for carers, and leave them ill-equipped to return to work when caring comes to an end. Nationally over 225,000 people providing 50 or more hours of unpaid care per week state they are in 'not good health' themselves. More than half of the people providing this much care are over the age of 55, and it is at these ages that the 'not good health' rate is highest. However, there are nearly 80,000 people aged 54 and under providing more than 50 hours of unpaid care per week, who state that their health was not good. According to national statistics the percentage of people aged 16 to 64 providing unpaid care does not vary greatly by social group. For both sexes the difference between those groups with the lowest and the highest proportion of carers was just 2 percentage points. However, there was a clear variation across the social groups in the number of hours of care provided. Over a fifth (22 per cent) of carers in routine occupations and nearly two fifths (37 per cent) of carers who had never worked or were long-term unemployed provided 50 or more hours of care per week. This compares with less than one in ten (8 per cent) of carers in the higher managerial and professional group. Lincolnshire JSNA: Unpaid Carers 9 of 11 May 2011 (v1)

10 Dearden and Becker (2000) reported that one of the most important decisions which young adult carers thought had been influenced by their parent s illness was that relating to their own choice of career or job: There may be a danger of young adult carers moving into caring jobs or professions because they feel these are the only skills they have to offer. Many of these jobs will be low paid with few prospects (p 39). Frank et al s study (1999), involving 66 former young carers aged years found a similar picture with almost half of them attributing their chosen career in a caring profession to their experiences of providing care and the acquisition of skills that they felt confident to use. Key gaps in knowledge and services Supporting carers to identify themselves as a carer is an area the Lincolnshire Carers Partnership focus a high level of activity. Target areas are at the point of diagnosis or discharge from hospital. Professionals not understanding what support is available to carers and how to refer carers to that support means many carers begin their caring role without being linked into the support they are entitled to. Young and young adult carers are often not recognised as carers and supported. The lack of transport can prevent carers from accessing the support available to them. There is a lack of available support for carers to choose how they have a break. Risks of not doing something If carers are not supported early in their caring journey or are not aware of the support available to them through a carers assessment they may be at higher risk of their caring role breaking down. Carers save health and social care 87billion a year that equates to an average saving of 14,500 for each carer per year, investment in early support can help to prevent breakdown and reduce costs on local services. Young and young adult carers are not aware of the support and services available to them and become isolated. What is coming on the horizon? Identification and recognition by supporting those with caring responsibilities to identify themselves as carers at an early stage Realising and releasing potential by enabling young and young adult carers to fulfil their educational potential Carers have life outside of caring and are confident in the future Supporting carers to stay healthy both mentally and physically Involving and including carers as equal partners Whole-Family Approaches to supporting carers Young Carers do not take on inappropriate levels of caring Lincolnshire JSNA: Unpaid Carers 10 of 11 May 2011 (v1)

11 What should we be doing next? Young Carers have access to a program of training to support their caring role. For example medication, food hygiene, lifting and handling and to a programme of looking after yourself education and training. For example drug awareness, sexual health, alcohol awareness Each school has a Young Carers Champion to raise awareness of young carers Develop a Young adult carer s awareness raising campaign for Higher and further education providers in Lincolnshire Increase and improve carer awareness through local community organisations for example GP s. Parish Councils, Schools and Libraries Increase the awareness of young carers across the seven District councils through the seven district Carer Champions Reach those carers who do not recognise themselves as a carer or are resistant to support Develop a carers hospital discharge pathway including Stroke Carer pathways Raise awareness of carers in employment with local employers and businesses Lincolnshire JSNA: Unpaid Carers 11 of 11 May 2011 (v1)