Putting People First without putting carers second

1. Putting People First without putting carers second Alex Fox, Assistant DirectorThe Princess Royal Trust for Carers afox@carers.org

2. Caring in the UK today • There are almost 6 million carers in the UK, rising to 9m. • 42% are men, 58% women. • 175,000 are children. • 1.2 million care for over 50 hours a week - a full time workforce greater than the NHS. • Around 2 million people move in and out of caring every year. • Estimates of the money carers save the government are as high as £87bn.

3. More than 80% say caring has damaged their health. • Three out of four are worse off as a result of caring. • 3% of carers reported that they had lost their homes. • 50% give up work; retiring 8 years early on average. • 50% subsidise the costs of the cared-for person’s disability. • Only 14% of carers have had an assessment which led to a change in support or services. • 28% of young carers have serious problems in secondary school.

4. Case studies An older couple in the North West with their own developing health needs and an adult daughter who has Downs Syndrome found that the agency who supplied care workers sent a different worker each day, which left both daughter and parents anxious and unhappy with the service. A direct payment allows the family to employ a worker with excellent results for the well being and stress levels reported by the whole family. A gentleman with a learning disability who attended five days at a Day Centre was approached about having Direct Payments and told about the control he would have and the freedom to do what he liked. By the time the family were told about the proposal, he was enthusiastic about it and his family felt obliged to agree. He now has an assistant employed to help him with activities, but it transpires that the allocation can only provide four days a week and no holiday or sickness back up when his assistant is unable to work. His mother agrees that he has a more active life but she has had to reduce her hours at work and limit her own career aspirations to fill in the gaps in care.

5. Sources of funding to pay for care • A personal budget administered by the Council. • Disability Living Allowance/ Attendance Allowance for the disabled person administered by DWP. • Carers Allowance for the carer administered by DWP. • Entitlement to free NHS Continuing Care in some cases administered by the PCT.

6. Benefits/ pension Work Housing Education/ training Outreach Health Participation, volunteering Family’s care needs assessed and supported Family potential and citizenship Leisure Mental health, relationships Choice & control Family’s self-care potential recognised and supported Safety/ risk taking Planning/ emergencies Parenting Unpaid family caring Information/ self-care training Peer/ community networks Towards a whole- family model? • Three outcome areas in the middle. • A range of possible services to meet the outcomes around the outside. • All of them require outreach (the middle band) to engage excluded families.

7. The caring “tipping point” • Lower level of care • provided long term • Healthy • Able to retain employment • High level of care • for a short time • Deteriorating health • Long term loss of employment

8. The Princess Royal Trust for Carers • We support 310,000 carers through 141 Carers Centres, including 15,500 young carers. • We find the most vulnerable and hardest to reach carers. • We provide personalised information, advocacy, benefits checks. • We support carers emotionally through the caring journey. • We support carers in GP practices, hospital wards, schools, at work and via outreach in rural areas. • We make sure carers’ voices are listened to by policy makers. Alex Fox, Director Policy and Communications: afox@carers.org 07896291846 www.youngcarers.net www.carers.org