1. Caring

2. Carers Paid Social Carers: Staff who work with people in residential care homes, in day centres and who provide care in someone’s home Unpaid Carers: Carers provide unpaid care by looking after an ill, frail or disabled family member, friend or partner. (Carers UK 2009)

3. What do carers do? Practical help (meals, housework etc) Personal care (washing, dressing, toileting) Physical help (getting in and out of bed, mobility) Finances Administer medication

4. Advantages of using the term ‘carer’ May identify need and open up the way to providing services May give recognition of the demands made upon carers and the contribution they make May offer some carers a sense of identity – more likely to attend support groups etc.

5. Disadvantages of using the term ‘carer’ May lead others to see that person only in terms of that definition and its associated responsibilities May lock some people into a role they do not want Some may dislike or reject the ‘carer’ tag, preferring to define themselves as a son, daughter, mother, etc Person being cared for may feel undermined if someone close is primarily defined as their ‘carer’

6. What is the impact of caring on the carer? Financial hardship Restrictions on career and employment Caring relationships can structure the carer’s life Isolation and restricted social life Feeling of total personal responsibility A lack of recognition and status A lack of support/services/useful information The physical and emotionally demanding nature of caring Difficulties in balancing the needs of other family members and other responsibilities Education may be disrupted Relationships may change in unanticipated and unwelcome ways

7. Explain the social exclusion of carers Carers have difficulty accessing holidays, leisure pursuits and other social activities Many carers get few or no breaks from their caring responsibilities Many carers look after individuals who do not receive any regular visits from health or welfare professionals Individuals cared for by relatives less likely to receive services Black and minority ethnic carers less likely to receive practical support

8. What is the impact of caring on the carer’s health? Carers have poorer mental and physical health than non- carers Injuries due to manual handing Stress and depression Unable to find time for own health check-ups or do things to improve own health May be reluctant to accept certain treatments if it interferes with caring May discharge themselves early from hospital

9. What is the impact of caring on young carers? Absence from school/lower educational attainment Behavioural problems/bullying Social exclusion/isolation Emotional problems/stress Physical health problems Traumatic life changes Poverty Lack support and benefits

10. What is a carer’s assessment? Carer’s have a legal right to an assessment of their needs Even if the person they care for does not want to receive help from social services. Establish what help carers require from local social services Usually carried out by a social worker

11. How can we improve the health of carers? Carers need to be given early information about rights and entitlements Provision of equipment quickly and in a timely fashion can make a huge difference Doctors play an extremely valuable role in signposting carers to the right kinds of support Regular health checks for carers Professionals should acknowledge the impact of the timing and nature of health decisions Carers need to be consulted about decisions where possible

12. Chronic Illness

13. Main areas affected by chronic illness? Daily living Social relationships Identity (the view that others hold of them) Sense of self (their private view of themselves)

14. The Expert Patient Programme Recognises the knowledge and expertise held by patients living with chronic illness Encourages patients to become ‘key decision makers in their treatment process’ ‘User-led self management’ for chronic diseases to be introduced to all areas of the NHS Provides training opportunities for people with chronic conditions to develop skills to 'self-manage' their condition more effectively. Open to all people living and coping with a long-term health condition Led by people with chronic health conditions.

15. Benefits of the EPP? Patient’s condition improves/stays stable Patients have more confidence in seeking health services for them Patients contribute to improving health services Fewer visits to GPs and outpatients, therefore saving NHS resources Patients and health professionals work together to find the best care/treatment options

16. Problems with the EPP? May not include participation of all social groups May exclude the most disadvantaged groups No corresponding strategy to challenge professional attitudes