1. PERSONALISATION AND CARERS Barbara Pointon MBE Former Carer Ambassador for the Alzheimer’s Society & Admiral Nurses; Member of the Standing Commission on Carers and CQC’s Advisory Board on Carers barbara@pointon.name

2. Malcolm in 1992, aged 51, just after he was diagnosed

3. (At this point in the journey) Our story and experiences How new Health and Social Care thinking could make a difference for future carers

4. An over-arching principle Impossible to neatly separate out carer and cared-for. Whatever happens to the cared-for has great impact upon the carer - and vice-versa. Good care makes for contentment of the cared-for and peace of mind for the carer Good support for the carer helps us to do our job better, and for longer The quality of our individual lives are inextricably intertwined

5. Getting a diagnosis Took 2 years 71% of GPs unconfident about dementia My becoming bewildered and impatient Protecting relationship ‘Confidentiality’ a barrier to discussions with GP Diagnosis: dropped into thin air; 3-yr gap until using services – carer reinventing the wheel. Care begins at diagnosis. Earlier diagnosis GP training; more memory clinics Carer’s active involvement in diagnosis and care Carers’ National Information Helpline and Website Caring with Confidence Dementia care advisor from the outset

6. Financial impact Both gave up work in our early 50s – reduced pension Carer’s allowance pitiful; stops at 60 Limit of £50p/wk on earnings – eaten up by replacement care – Flexible working not possible – 24/7 care Impoverishment of the family Dept of Work/Pensions reconsidering allowances and limits on earnings; still watershed of retirement age Protecting the financial position of those of working age Flexible working Plight of elderly people? Hidden ageism?

7. Agency services for personal care Lack of time to do job properly Not given travelling time Lack of continuity of personnel Not dementia-trained Poorly paid I would have welcomed some training in caring Commissioning issues Carer relies on quality of paid care Personalisation begins with not rushing the job Dignity depends on continuity Dementia training for whole workforce (DS) CQC: raising standards of domiciliary care Caring With Confidence: generic programmes – face-to-face and distance learning

8. Nana’s come to play with us!!

9. Carers’ Breaks – emergency and planned 142 hrs on duty or on call Took what was offered, not asked what I’d like Unreliable respite: phone calls to fetch him back Came back from respite in a worse state Not all are joiners-in Daycare – unsuitable activities – collapsed Carers won’t take breaks if care provided is poor £25m addition funding for emergency care cover Personal Budgets: choice to spend in a more tailored way Replacement care at home Workforce training CQC – daycare remit? Sharing information between services

10. Dealing with perplexing behaviours With 20/20 hindsight, I made so many mistakes Carers need insight into the particular condition they are dealing with Some family and friends faded away Loss of hobbies and social life – stigma and isolation Neglecting personal health Effect on one of our sons Caring with Confidence – programmes tailored to specific conditions Access to expert advice – e.g. Dementia Care Adviser; carers’ charities Meeting other carers to swap tips/website chats Stigma and ignorance A life outside caring Regular health checks Support for whole family

11. In the Carehome Exhaustion and breakdown of care support systems caused me to place M in a carehome for my sake, not his. Guilt. Once a carer, always a carer – excluded from important medical decisions Better support and training for family carer, higher quality/reliability of workforce will delay expensive carehome admission The Interfering Relative or Partner in Care? “Expert care partners” – involved and consulted in all medical/care decisions

12. In the nursing home, February 2000

13. 3 months after returning home, June 2000

14. Direct Payments Had to fight for them Employed own staff –Choice who worked in our home –Continuity of personnel –Replacement care at home –Flexibility with changing needs –Less expensive; careworker had more take- home pay –Support from Rowan Association & Tax Office –Some rogue carers More freely offered Personalisation; tailored, flexible care Personal budgets for carers: tailored, flexible uses Professional support still required Local registers of approved workers

15. The dining room, turned into Malcolm’s room, with electrically- operated recliner chair, hospital bed, hoist and manual wheelchair

16. 100% NHS Continuing Care 3-yr battle to get it Big hiccup – institutional view (8 hour shifts) Care should not be defined by who gives it – kept our staff and pattern of care Respite care– whose responsibility to fund? Had to buy a lot of equipment ourselves, even latex gloves Huge variation by locality for people with dementia Personal Health Budgets should ease the transition Personal Budgets for carers Financial help towards the hidden costs of caring More integrated thinking

17. Barbara and Malcolm, January 2006

18. Out-of- Hours Doctors GP District Nurses Social Worker Malcolm & Barbara Consultant Continence Adviser Speech & Language Adviser Dietician Community Dentist Occupational Therapist Equipment Service Physiotherapist Alternating Mattress technician Wheelchair Service Oxygen service Direct Payments Team; Rowan Org. Alzheimer’s Soc outreach worker Care team 2 live-in carers (alternating weekly) Replacement carer Some night nursing Emergency carers Barbara The Web of Care

19. Support for the carer in the severestage Dealing with umpteen different Health and SS professionals Battles for equipment – it’s needed now! Advice on dementia nursing skills Carer’s assessments were not an entitlement to action Send to hospital or not? Palliative care team only for cancer in our area One main contact More responsive, personalised and integrated services Access to dementia advisory nurse in community team? Carer’s assessment should result in action Support to enable patient to die at home if wished Widen hospice outreach

20. Bereavement support Long term carers often cannot grieve properly Delayed bereavement shock (16 months) Carer’s ill-health (especially auto- immune system) Ongoing emotional and practical support for carer, possibly family Regular health checks should continue

21. How would carers like to be treated? Feeling that we are valued, respected and supported – just like those we care for Truly personalised support, moulded to our individual physical, mental, psychological and emotional profile of needs and to the unique social and family setting in which the care is taking place.