A Carer’s Perspective And Insights Into Caring East of England Stroke Forum Dr Maryan Pye Dr 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 be a 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 National Carers Strategy ‘Refresh’ ( )

 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 Assessment  A 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 and Early 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. Carers Trust

Crossroads Care Cambridgeshire  Core respite breaks service for carers of adults and children  ICER 24/7/365 Carers Emergency Service  GP Carers Prescription Service  Carers Groups  Young Carers  Groups for disabled children  Dementia 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:  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