Scottish Medical Journal

Editorials/Comments

June 2001

Patient empowerment. Stroke - A strategy for Scotland.

It has always been recognised that medical knowledge percolates slowly into clinical practice. Major efforts have been made to speed up this process by the creation of standards, guidelines and clinical governance, all of which come from within the profession. Little attention has been paid to the view of patients or indeed patients’ organisations. As a result of research sponsored by the Clinical Resource and Audit Group (CRAG) and Chest Heart and Stroke Scotland, the voluntary organisation which represents the view of stroke patients and their carers, a strategy for Scotland has been produced and launched (28 March 2001). This document is evidence based and will empower stroke patients and carers to demand optimal services from Health Boards, Acute Trusts and Primary Care. Our own commissioned studies suggest that we have a ‘curate’s egg’ phenomenon with the usual lottery of post-code distribution. Our intention is to mount a major publicity campaign with a view to re-auditing the situation in two years’time.

Stroke facts for Scotland
About 15,000 new strokes occur per year.

• The mortality in the first stroke is 20-25%.
• Scots have a one in eleven chance of dying from a stroke.
• Most stroke patients return to their own home, about half with significant disability.
• Stroke is the major cause of long-term adult disability.
• About 80,000 stroke survivors are present in the Scottish population.
• About 13 per cent of NHS beds are occupied by stroke patients at any time.
• Provision of properly organised stroke services would save at least 350 lives and 1000 patients from major disability per year.

What patients should expect:
A Strategy for Stroke Services 1. Diagnosis and assessment -
Identifying the problems and assessing what the patient needs

• Everyone should be made aware of the symptoms of a stroke; particularly those in high-risk groups - for example, those with a family history of stroke, coronary heart disease or high blood pressure.
• Those with minor symptoms, which resolve quickly, should be seen in a fast-track assessment clinic within no more than two weeks. They should receive a full medical assessment and investigations, including a CT scan and (if appropriate) carotid doppler ultrasound and echocardiography.
• Ideally, this should be a 'one-stop' service. Patients should be given a full explanation of the purpose and results of all investigations, and of action to reduce the risk of future strokes. Appropriate dietary and therapy advice should also be provided.
• Patients with severe or persisting symptoms should be admitted as an emergency to hospital. They should receive immediate medical assessment, with all relevant investigations, including CT scan carried out within 48 hours.
• Patients should be assessed for their nursing and other care needs, and have an immediate swallowing assessment. Patients and their carers need to be fully informed of the purpose and results of all investigations, and as far as possible of the likely outcomes.

2. Acute care and rehabilitation - Hospital based services

• Patients should expect to be cared for in a dedicated stroke unit. This should be staffed by medical, nursing and therapy staff with a specialist interest and expertise in stroke care, operating as a multi-disciplinary team. The stroke service should provide both acute care and specialist stroke rehabilitation.
• In rural areas with small hospitals and dispersed populations, this may not be possible. In these circumstances, patients should still be treated using agreed protocols for stroke care, and rehabilitation should make use of generic rehabilitation facilities.
• Nursing care should be provided by staff with specialist knowledge and skills in stroke. There should be particular attention to potential problems such as swallowing and eating, fluid balance and hydration, nutrition, mobility, continence, associated cardiovascular problems, infections, prevention of pressure sores and skin care problems. Patients may also have vision or cognitive problems; nursing staff should be aware of this and ensure the patients’ dignity is respected at all times.
• Patients are likely to be affected by anxiety and emotional problems, and are at significant risk of depression; this needs to be monitored, and appropriate action taken to support patients and carers.
• There needs to be early assessment for physiotherapy, occupational therapy, and speech and language therapy, by staff specialising in stroke. Patients who can regain mobility should be encouraged to do so as soon as possible.
• Patients and their carers need to be kept fully informed of the aim of rehabilitation and the probably course of recovery, and of action taken to reduce the risk of future strokes. Appropriate secondary prevention measures should be initiated as soon as possible.
• Information provided in booklet, video and audio tape form is particularly useful for both patients and carers. Publications such as those provided by CHSS should be made available, together with information on the CHSS Advice Line. The Charity can also organise visits by trained volunteers to hospital stroke patients, which can be particularly helpful for those with limited family support.

3. Discharge planning - Returning home from hospital

• Discharge planning should begin well in advance, and be based on the individual needs and circumstances of the patient. Patients and carers need to be kept fully informed, and consulted at each stage in the process.
• There needs to be full consultation and joint working with local authority and primary care services to ensure that the full community care package is available to patients and carers immediately on discharge. This includes all necessary assessments for OT aids, adaptations and equipment.
• Initial appointments, for example with therapists, should be arranged before discharge. There must always be close co-ordination with the patient’s general practitioner.
• Patients and carers who could potentially benefit should be made fully aware of the services provided by voluntary agencies such as CHSS, and appropriate referral procedures put in place.
• Follow-up after hospital discharge is vital for both patients and carers. There should be a named telephone contact to deal with any immediate problems following discharge, a post-discharge visit within two to three weeks, and a follow up after two to three months.
• Ideally, a stroke liaison nurse or CHSS stroke nurse should make contact with the patient and carer prior to discharge and follow up regularly over the following 6-12 months, through home visits and telephone contact.
• General practitioners need to be kept fully informed and undertake responsibility for monitoring patients’ progress at home. In particular, GPs should ensure suitable secondary prevention measures are taken, including smoking cessation, and management of risk factors such as hypertension, diabetes and atrial fibrillation. Problems associated with stroke, such as cognitive and behavioural problems, and depression, should also be monitored.

4. Community support - Long-term care and support at home
The primary care team should ensure that patients and carers are given information on statutory benefits such as Disability Living Allowance and Attendance Allowance, for which they may qualify. They should be referred to the National Benefits Agency Enquiry Line, local Benefits Agency, Citizens’Advice Bureau, Welfare Rights Office, or any other agency that might be able to help.

• Patients under retirement age should be given advice on agencies which can assist in helping them get back to work, if this is feasible. Patients who drive should be advised on returning to driving, if appropriate.
• Speech and language therapists and general practitioners should make patients with communication problems aware of the CHSS Volunteer Stroke Service, and where appropriate, initiate referral procedures.
• For other patients, CHSS also provides a network of local stroke clubs, run on a voluntary basis and offering social support, activities and companionship. Patients and families should be made aware of these clubs and the means of accessing the services they offer.
• In some parts of the country, there are also separate groups for younger stroke patients operated by both CHSS and Different Strokes. Patients under 65 should be given information on these groups if their services are available locally.
• At every stage in the process, from admission to long-term support in the community, patients and carers need to be provided with the fullest possible information, and encouraged to take the maximum responsibility for their own recovery. Patient organisations must clearly be encouraged to play a major pro-active role in health care in the future with a view to pressurising Government and its committees to provide or upgrade services.

  Back to Editorial/Comment Menu