Improving Services for younger stroke survivors and their families

Executive Summary

This study was commissioned by Chest, Heart & Stroke Scotland from the Strathclyde Centre for Disability Research of the University of Glasgow in May 2000, as part of the charity's review of services provided to younger people affected by stroke, and their carers. The specific aims of the study were:

To investigate the experiences of younger stroke survivors and their families.

To identify the services available in the community for younger stroke survivors

To investigate ways in which services could be improved, helping to facilitate a smooth return to independent living, including education, training, employment, social and leisure activities.

The study was undertaken with 50 younger stroke survivors and their partners, relatives or carers, identified from stroke registers in four NHS Board areas in Central Scotland. Participants were interviewed twice, using a range of validated research tools, at 3-6 months post-discharge and again 6-9 months later. Further information was collected from a range of health professionals involved in stroke care. The project was undertaken under the supervision of a steering group which included academics, clinicians, patients and representatives of CHSS. 

Many of the recommendations in the report reinforce those made in other recent reports of the experiences of stroke patients and carers. These include the need to tackle longstanding problems such as variations in service provision, poor communication and lack of information, lack of understanding of the potentially devastating impact of the stroke on both patient and family, and gaps in post-discharge and longer-term community support. In addition, however, this report also highlights particular issues specifically affecting younger stroke survivors and their families, including:

The impact of receiving acute care and rehabilitation within services catering primarily for older people.

The difficulties experienced by relatives or carers with family, employment and other responsibilities.

The need for information and enhanced support in areas including retraining, education, access to employment and welfare benefits.

The key role which specialist stroke nurses can potentially play in providing individualised support.

The need to acknowledge and support family and other carers.

Background

In Scotland, 4,598 adults of working age (18-64) were admitted to hospital following a stroke in the year 2000-201. Of these 1,100 were aged less than fifty. However, because the incidence of stroke increases with age, service provision is often geared towards older individuals, neglecting the particular needs and expectations of younger stroke survivors and their families.

In addition to age, gender and deprivation are implicated in the incidence of stroke. Under the aeg of 45, there is little difference between males and females. Above 45, however, incidence increases more rapidly amongst males than amongst females. There is a higher incidence of, and mortality from, stroke amongst people of working age (less than 65) living in deprived areas. However, amongst people over 65 there is no association with level of deprivation.

People who have a stroke experience a sudden onset of disability; about half are left with a permanent handicap. Damage may result in both physical and mental impairment. Stroke impacts on both patient and their families and research has demonstrated that many family care givers experience difficulty coping with their caring role.

Recommendations – Discharge from hospital

Planning

YSS, particularly those on mixed age wards, should be offered supported discharge as early as possible. However, it is vital that the agreement and understanding of relatives is sought prior to YSS being discharged.

Therapy should be organised in the community immediately on discharge. Where this is not possible YSS and their families should be contacted and told how long they are going to have to wait.

Information

In addition to discussions with relevant Stroke Consultants and specialist staff, YSS and their families should be provided with information leaflets in plain English, or other languages where appropriate.

All YSS and their families should be provided with information, both face to face and leaflets, relating to 1) welfare benefits, 2) lifestyle changes, including changes in diet and smoking cessation, and 3) voluntary organisations working in their area.

Stroke nurses

Attention should be paid to standardising the role of stroke nurses. This role should encompass liaison/advocacy and raw on many aspects of current practice – including the provision of accessible specialist information and linking different agencies, including health, social services, employment, education, housing, the benefit agency, and voluntary organisations.

All YSS discharged into the community should be visited by a stroke nurse within two days of discharge. This early visit should identify and address any difficulties and provide the YSS and their family with a timetable of what is likely to happen in terms of service input in the following weeks. The stroke nurse should continue to work with both the YSS and other family members as required.

Stroke nurses working in the community should be aware that young stroke survivors and their carers are concerned about recurrence.

Carers

Health professionals working with families should ensure that relatives or carers are aware that they may be regarded as a carer, the type of support that may be available, and that they have a right to a carer's assessment. Particular attention should be paid to family members with multiple responsibilities, eg young children and employment, in order to support them immediately following discharge.

Carers of YSS who are being discharged should be trained in lifting and handling if needed and any other tasks that they will carry out. They should be provided with a contact telephone number should they have any queries.

Recommendations – coping in the community

Services

Members of stroke teams working in the community should be aware that YSS and their carers, particularly where the cause of stroke is unknown, are concerned about recurrence. YSS should be informed that relevant tests will be carried out as soon as possible.

YSS should have access to therapists as required. Wherever possible YSS should receive therapy with other younger people, eg through a physical disability team.

Therapists should work in partnerships with YSS, explaining the purpose behind specific tasks or procedures and informing them of progress.

Where services are being terminated YSS should be given advance notice. If appropriate YSS should be made aware of suitable exercise classes, eg those organised by voluntary organisations. Greater use should be made of referrals to local gyms.

Homes should be re-assessed after discharge in order to ascertain if further adaptations or equipment are required.

Where appropriate YSS should be supported in making lifestyle changes, eg smoking cessation or dietary changes.

Carers

YSS and their carers should be made aware that mood swings and depression are prevalent post-stroke. Families should be encouraged to discuss these issues and be referred to a counsellor or psychologist if required.

The input of relatives and other supporters must be acknowledged. Health professionals working with families in the community should carry out carers' assessments and monitor the transition to caring, paying particular attention to family members with multiple responsibilities eg young children and employment.

Stroke nurses

Where families include children or young people stroke nurses should ascertain whether there are any difficulties and provide written information appropriate to their age group.

Stroke nurses should provide support to carers as well as survivors, seeing them on their own in order to identify difficulties that they may be uncomfortable discussing in the presence of the YSS.

Stroke nurses in contact with families should ascertain whether or not carers were in employment at the time of the stroke and ensure that support is in place to enable them to return to work.

YSS and their families needing support in the community should be offered the option of receiving Direct Payments which would enable them to organise their own services.

Recommendations – Moving onR

Services

YSS may require long-term follow up which should be provided by a multi-disciplinary team working in the community.

YSS should continue to have access to therapists as required, preferably in a setting with other younger people.

Particular attention should be paid to difficulties with speech and language, and/or cognitive impairments. YSS should be assessed and given support to enable them to cope with some of the difficulties, eg strategies to improve memory.

YSS and their carers should be aware that mood swings and depression are prevalent post-stroke. Referral should be made for counselling or psychological support as required.

Younger people who have experienced a stroke should be covered by a ‘high risk groups approach' to stroke prevention and health improvement (Scottish Executive, 2002), and be supported in making lifestyle changes, eg smoking cessation or dietary changes.

YSS and their families needing support in the community should be offered the option of receiving Direct Payments which would enable them to organise their own services.

The input of relatives and other supporters must be acknowledged. Health professionals working with families in the community should ensure that a carer's assessment has been carried out.

Employment

Issues relating to employment should be addressed. Therapists should ensure that they are aware of the previous employment status of YSS in order to assess possible options for the future. Vocational rehabilitation consultants, disability employment advisors, and voluntary organisations should be involved where appropriate.

Relatives or carers who were in employment at the time of the stroke but have not returned to work should be encouraged and supported to return. Where a carer is unsure about returning to work they should be given an opportunity to discuss their options with an employment adviser as well as their stroke nurse.

Where a return to employment is not anticipated for either the survivor or carer, a full benefit check should be carried out.

Stroke nurses

Stroke nurses should provide support to carers as well as survivors, seeing them on their own in order to identify difficulties that they my prefer not to discuss in the presence of the YSS.

Where families include children or young people stroke nurses should ascertain whether there are any difficulties. Families should be referred for support: eg family or individual counselling if they are experiencing difficulty with the sudden changes associated with the stroke.

Post-stroke recovery is a long-term proposition: while some level of residual physical impairment may have to be accepted, social adaptation is limitless. At the time of the second interviews, twelve to fifteen months post-discharge from hospital, a proportion of the YSS who took part in this study had put their stroke behind them and moved on. For others progress was slower; survivors and their families were still coming to terms with a changed lifestyle and in need of support, possibly for some time to come.

Pauline Banks and Charlotte Pearson

Strathclyde Centre for Disability Research