Select Committee on Health Written Evidence


Memorandum by The Stroke Association (PC 12)

  1.  The Stroke Association is the country's leading charity solely concerned with stroke and provides support to people who have had a stroke, their families and carers. We campaign, educate and inform to increase knowledge of stroke at all levels of society. We run Dysphasia Support Services and Family Support Services locally and provide a national helpline. We fund and promote research and campaign for a higher priority to be given to stroke prevention, treatment, care and research.

  2.  Palliative therapy is designed to reduce the intensity of uncomfortable symptoms but not produce a cure. There is, at present, no cure for a stroke and therefore treatment is aimed at rehabilitation and therapy.

  3.  Some strokes are small and patients can make a good recovery. A large stroke is potentially devastating, as if much brain function is lost, the rest of the brain is unable to take over and the patient may die or be left with long-term severe disability.

  4.  Some 55,000 patients die every year from stroke, which is the fourth biggest killer in the UK. Research outlined in an article in the journal Stroke has highlighted the lack of palliative care given to non cancer patients and there would appear to be little palliative care given to those with stroke. "The needs of and care received by those patients who die of stroke have received little attention. There is some evidence that general practitioners in England would like specialist palliative care services to be extended to encompass stroke patients."[1] This would indicate that this was not the case in 1995 and there is little evidence to suggest that the position has changed nine years later.

  5.  One of the after effects of stroke is central post stroke pain. Sometimes referred to as thalamic pain, it is much more common than previously thought. This type of pain can be severe, interfering with good quality life and bringing real distress to a stroke patient, their families and carers. Pain may not appear at once but can occur up to two years following a stroke. It affects all of the stroke side and is unremitting in character. It does not respond to the usual pain relief programmes, as the brain is telling the body that there is pain, rather than there being a physical cause for the symptoms. A study found that pain relief is an important aspect of hospice and palliative care and it may be this aspect of care from which a stroke patient could gain benefit.

  6.  In addition many stroke patients have other symptoms towards the end of their life. In one study at least half the patients were reported to have experienced pain, urinary incontinence, low mood and mental confusion in the year before death. Breathlessness, insomnia, loss of appetite, constipation and loss of bowel control were reported to have been experienced by at least a third. Many were reported to have had these symptoms for at least six months.[2]

  7.  About 24% of people die within a month of having their stroke[3] and it is important that they are also ensured quality of life during their hospital stay. The NSF for Older People states that where recovery is not possible, "The principles of palliative care should inform the care plan, with priority being given to supporting the patient to die with dignity, without unnecessary suffering, and in the place of their choice wherever possible." Therefore general hospital staff must be aware of the need for palliative care and examples of best practice. It must be recognised that palliative treatment should not just be for the long-term terminally ill but must also take into account the many people whose life will end soon after a stroke.

  8.  Quality at the end of life is equally important to stroke patients, their families and carers as to those with terminal cancer or other fatal illnesses. However the evidence would suggest that few stroke patients receive palliative care and The Stroke Association believes that more research should be done into its effectiveness for those with stroke.

1   Addington Hall et al, Symptom Control, Communication with Health Professionals, and Hospital Care of Stroke Patients in the Last Year of Life as Reported by Surviving Family, Friends and Officials, Stroke Vol 26, No 12 December 1995 p 2242-2248. Back

2   Ibid Back

3   Charles Woolfe, The Burden of Stroke, Charles Woolfe, Tony Rudd, Roger Beech (eds) Stroke Services and Research; An Overview, with Recommendations for Future Research, The Stroke Association 1996. Back

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