A Carer’s Perspective And Insights Into Caring

East of England Stroke Forum

Dr Maryan PyeDr Helen Brown

Crossroads Care Cambridgeshire

A carer is someone who provides unpaid support to a person who could not manage without that help.

The caring responsibilities exceed the normal expectation for the relationship.

What does it mean to bea Carer?

• Personal care• Nursing care• Physical support• Organising Healthcare• Therapy support• Extra domestic and administrative work• Etc…

What do Carers provide?

Physical•Lack of sleep, healthy eating exercise etc•Neglect of own health needs•Strains and injury•Loss of employment and financial strain

Mental and emotional•Stress and anxiety•Loneliness and depression•Loss of independence

The impact on Carers

Early identification and support. Personalised support for carers and those they

support, enabling them to have a family and community life.

Supporting carers to remain physically + mentally well. Enabling those with caring responsibilities to fulfil their

educational/employment potential. Ensuring young carers do not carry out inappropriate

levels of care and can achieve in education and employment.

Key Priorities in the NationalCarers Strategy ‘Refresh’ (2011-2015)

Integration: A key theme – emphasis on integrated services (health, social care and importantly housing) - with JSNA and Health and Well-Being Boards engaging the community in determining local priorities. Must develop proactive services providing support before a crisis develops.

Information, advice, advocacy and brokerage, a ‘navigator for the system’ are seen as high priorities.

Carers’ assessments: Issues about timescale and complexity of carers’ assessments – recognition that assessments need to address ‘whole family issues’. Propose to give carers a right to support with an assessment.

Key themes in draft Care and Support Bill

Carers AssessmentA carer's assessment will look at the role: how being a carer affects them, how much caring they can realistically do while still being involved in other activities outside caring, and any help needed.Even if the stroke survivor refuses help and will not be assessed by a social worker, carers can still have a carer's assessment in their own right. But:

Currently carers have no right to services following an assessment.

Any allocation is linked to that of the person with care needs. FACS?

Carers grants and/or breaks are usually available from social services.

Also, carer have rights in employment and some financial rights.

Make sure you recognised and refer carers for information

Carers have some rights

The importance of early support: Strong research about the value of ‘low level’ services such as drop-in centres, carer support groups; carers’ resource centres – and widespread recognition of the value of GPs (and the growing number of ‘carers champions’ in GP surgeries) in early identification and signposting.

Housing emerged as key issue for many carers in Standing Commission’s recent Fact Finding visits. Many carers told SCOC that ‘having the right home where you feel safe, can feel as independent as possible and where you have quality of life matters more than anything!’

This is especially important in households where adaptations may be needed.

Your role in Prevention andEarly Identification

Iris …. a stroke and vascular dementia

• “introverted”

• “don’t care enough for me”

• “takes over your life – don’t have a life”

• “Caring with Confidence – amazed, as able to talk about all of my problems”

• “don’t wait until things are really bad before asking for help”

• Married 33y and he’s a wonderful husband

and Mary… a stroke and vascular dementia

• “you learn whilst you’re caring – today is enough!”• “Always thinking with 2 heads for 2 people; invaded”• “I’m in love with him and he’s in love with me. We

have a solid marriage and I want to be with him.”• Please don’t assume carers want a break

independently of the person they care for.• “Carers groups – I would never say anything like that

anywhere else but here” • “Pamper days are quite wonderful”

The leading carers organisation - a merger of Crossroads Care and the Princess Royal Trust for Carers.

Our vision

A world where the role and contribution of unpaid carers is recognised and they have access to the quality support and services they need to live their own lives.

www.carers.org

Carers Trust

Crossroads Care Cambridgeshire

Core respite breaks service for carers of adults and children

ICER 24/7/365 Carers Emergency ServiceGP Carers Prescription ServiceCarers GroupsYoung CarersGroups for disabled childrenDementia Home from Home

Scheme name: Crossroads Care Cambridgeshire Presenter names: Dr Maryan Pye and Dr Helen Brown Presenter positions: Trustee and Chief Executive Presenter contact details:

0845 241 0954care@crossroadscarecambridgeshire.org.ukwww.crossroadscarecambridgeshire.org.uk

Geographical area: Cambridgeshire, Peterborough + Number of staff: 146 (96 FTE) Number of volunteers: 18 Number of trustees: 9 Number of service users 2011/12: 3790 carers (845 using care

breaks) and 3319 people with care needs

Supplementary Information