An estimated one million people in Scotland are living with a neurological condition which has a significant impact upon their lives.

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1 Carers Week 2013 Briefing Caring for Someone with a Neurological Condition Key points About one million people in Scotland live with a neurological condition that affects their lives. Many depend on support from partners, family and friends to manage their condition Carers for people with neurological conditions face a wide range of particular issues. Members of the Neurological Alliance of Scotland identified five major areas where carers of people with neurological conditions may need particular support: navigating NHS and social care systems to secure the statutory support that the person they care for needs, particularly when the person s needs are complex a lack of information about neurological conditions and symptoms, which can be complicated and difficult to live with getting support for hidden needs which may not be obvious to professionals, are stigmatised, or where care is not routinely provided financial worries, and particularly those associated with changes to the benefits system emotional needs driven by the impacts of many neurological conditions on fundamental aspects on the person cared for, like insight, personality, behaviour and cognition. About Neurological Conditions An estimated one million people in Scotland are living with a neurological condition which has a significant impact upon their lives. Neurological conditions are caused by damage to the nervous system, often as a result of illness or injury and can affect all ages and can begin at any time in a person's life. Some neurological conditions are life-long and may be present from birth, such as Spina Bifida or cerebral palsy. Other conditions such as Alzheimer's and Parkinson's disease will affect mainly older people. An injury or illness, such as a head injury or stroke, meningitis, or cancers of the brain and spine can cause damage to the nervous system. Some neurodegenerative conditions, such as multiple sclerosis and motor neurone disease, occur mainly in adulthood and are progressive, causing deterioration over time. This means that a person's ability to live independently becomes difficult and they will rely more on appropriate services and carers to assist them. Most neurological conditions affect people's quality of life and some will cause life-long disability. Levels of awareness are low even about some of the more common conditions meaning that people with a neurological condition may face a lack of understanding and sometimes unhelpful attitudes

2 from others. Carers of someone with a neurological condition may face many complex challenges and often require additional support to enable them to cope. Caring for Someone with a Neurological Condition A carer is someone of any age who provides unpaid support to family or friends who could not manage without this help due to illness or disability. Carers of people with neurological conditions may often provide personal care such as getting someone dressed, turning them in their sleep, helping them to the toilet, helping them move about or administering medication. Carers also often help with household tasks or managing money. Often carers take an active role in ensuring that their family member accesses appropriate information, equipment and a range of services needed to manage their condition. Carers of those with neurological conditions will have support needs that are similar to all carers of someone with an illness or disability. However the Neurological Alliance of Scotland believes that neurological conditions can present a wide range of complex challenges for carers of people with neurological conditions. Our member organisations have identifies the following five areas where carers for people with neurological conditions may require particular emphasis, understanding and support. 1. Care Provision People affected by long term neurological conditions will usually require a range of NHS and Social Care services. They often rely on a range of care providers in the community to provide support with personal care (dressing, feeding etc), physical care (positioning, spasticity management etc) and cognitive, psychological and communication management. Care providers in the community may have a low awareness of a particular neurological condition and how it affects people and informal carers can subsequently have low confidence that their family member will receive appropriate care. It is important that people with a long term neurological condition have their care and support delivered by staff who understand the management of complex problems associated with neurological conditions. There are often difficulties in accessing respite care and a lack of suitable provision for people with complex needs. Often there simply is not age- appropriate respite care available for younger people, and carers feel it is unacceptable for their family member to access care which is aimed at older people.. Many people with neurological conditions and their carers identify ongoing family support from third sector organisationsas crucial in enabling them to come to terms with and manage their condition and improve quality of life. Self management is extremely useful for anyone with a long term condition, however it should be understood that for many people

3 with a progressive neurological condition, self management must be well supported and that the nature of the condition means that specialist care is crucial. 2. Information Many neurological conditions can have extensive symptoms and can often be difficult to diagnose meaning that the person and their family have had a sometimes lengthy period of ill health before they are able to access the services they need. Some neurological conditions may be fluctuating (e.g. ME, relapse remitting MS) from day-to-day, or with longer periods of remission; others progressive and increasingly debilitating (e.g. MND, PSP). If neurological disability has resulted from an acute incident (e.g. stroke, ABI) there may be hidden disabilities, particularly in terms of cognitive function and fatigue. Accurate and timely information given to carers of someone with a neurological condition is crucial to ensure that carers are involved and able to understand their family member s condition and what to expect. The complexity of many neurological conditions mean that information is needed not just regarding signs and symptoms, but also often on medication, specialist equipment, and psychological management. It is important that carers are seen as partners with NHS and social care staff in the ongoing care and support of the person with a neurological condition and have access to the information they need. 3. Hidden Disabilities Hidden disabilities are common with neurological conditions and can be particularly challenging. There is evidence of much stronger associations of carer burden and distress and the prevalence and severity of hidden problems (Jackson et al 2011). Often people with a neurological condition will require night time care which will be provided by their informal carer. For example mobility difficulties may mean that assistance with positioning in bed, night time toileting etc is needed. There is a lack of night time care support available to carers of people with a neurological condition. 4. Financial Issues Financial management can present huge concerns for people affected by neurological conditions. Many carers of someone with a progressive neurological condition have been unable to continue with work due to the nature of caring for someone with a degenerative illness and carers allowance is crucial to enable them to manage financially. Welfare reforms are a huge concern as the possibility of the loss of Disability Living Allowance (DLA)/Personal Independence Payment (PIP) and Employment and Support Allowance (ESA) would result in carers having to financially support their family member and also losing their carers allowance. The complexities of some neurological conditions, possible fluctuating symptoms and hidden disabilities means that there is a very real possibility of loss of benefits in some

4 cases particularly if assessment is carried out by an independent person with little understanding and awareness of neurological conditions. The subsequent strain on people with neurological conditions and their carers in appealing loss of benefits due to welfare reforms will be substantial and for many will result in crisis. People with neurological conditions and carers may require additional support to benefit from Self Directed Support, as the responsibility for organising a range of different services can be daunting, especially for families who are adjusting to an acute incident or deterioration in the person s condition. People with a neurological condition, particularly those with cognitive or communication impairment, may have difficulty in using direct payments/personal budgets and will require ongoing support from their carer in organising care services. It can also be very difficult for carers to feel confident in recruiting suitable people who have the knowledge and experience of providing care services to people with complex symptoms. 5. Emotional Needs Many neurological conditions have not just physical but psychological and behavioural impact. There can be complex issues for carers around the loss of their family member due to the condition. There may be personality changes, cognitive impairment and mental health problems as a result of the condition as well as the physical issues such as mobility difficulties, frailty and fatigue. Caring for someone with a neurological condition may have a detrimental impact on wellbeing and quality of life. Research (Jackson et al 2011) has identified that these carers commonly experience: exhaustion anxiety loss of personal freedom relationship tensions Psychological support for carers adjusting to the decline of their family member with a progressive condition or adjusting to the changes in personality and behaviour of someone with a sudden onset condition or injury is crucial and is often lacking. Background to the Neurological Alliance of Scotland The Neurological Alliance of Scotland is a forum of not-for-profit organisations and groups representing many thousands of people affected by neurological conditions in Scotland. The Alliance enables neurological organisations and groups to campaign together and speak with an influential voice. The Alliance has three main aims: Influencing Policy

5 To inform and influence policy by bringing the needs of people with neurological conditions to the attention of health and social policy makers and strategists. Raising Awareness To raise awareness and disseminate information about neurological conditions and their impact on individuals and society. Improvements in care To promote improvements in care for people with neurological conditions The Alliance has the vision that People living with neurological conditions will have access to the best care possible, have control over their lives and be able to live free from ignorance and injustice. References Jackson et al (2011) Support for carers, particularly those with multiple caring roles: An investigation of support needs and the cost of provision. LTNC