New NHS advice published today (Wednesday 25 July) will improve the mobility and comfort of thousands of children and young people who have stiff muscles caused by neurological disorders like cerebral palsy, says NICE.

For the first time, the National Institute for Health and Care Excellence (NICE) has published a clinical guideline on how doctors and nurses should care for under-19s who have spasticity; a condition that makes the muscles more stiff and rigid than usual. It can cause spasms and severe problems with walking, sitting, speech and swallowing.

Among the new recommendations, NICE advises that healthcare professionals should:

• Refer all children and young people who are diagnosed with spasticity to specialists without delay. They should be promptly assessed by a physiotherapist and, where necessary, an occupational therapist.
• Consider treating the child or young person with continuous pump-administered intrathecal baclofen if they still experience pain or muscle spasms, or problems with posture, everyday activities and personal care, despite them trying less -invasive treatments (e.g. physical therapies, orthoses, oral drugs and Botox injections).
• Offer a management programme that is developed and implemented with the child or young person and their parents or carers, and that is individualised and goal-focused.
• Help children and young people and their parents or carers to be partners in developing and implementing this management programme by offering relevant information, regular opportunities for discussion and advice on how their different treatment options could affect their potential to develop.

Professor Mark Baker, Director of the Centre for Clinical Practice at NICE said: “Spasticity is a lifelong condition which can affect children and young people in a variety of ways. It is associated with several neurological conditions, including cerebral palsy. This variability can lead to large differences in how people are treated and cared for. Whilst there is no cure, there are several treatments that can improve comfort and mobility and reduce pain. It is therefore imperative that these are offered to those affected and in a prompt manner.

“This is the first time NICE has published guidance on the range of ways the NHS should treat and support those affected by spasticity. We hope that it will help healthcare professionals to select and use the most appropriate treatments for their patients so that those affected can have greater comfort and independence and be integrated as much as possible into society.”

Nearly 24,000 children and young people under 19 years of age are believed to have spasticity in England and Wales. It is associated with non-progressive brain disorders, such as cerebral palsy, meningitis, stroke and severe brain injury.

Among the other recommendations published today, NICE encourages doctors who perform the spinal operation selective dorsal rhizotomy in patients whose spasticity causes them to have limited mobility or to walk with assistive devices to enter their patients into a national research programme which compares this surgery with other treatments. This is so that more can be learnt about how well the procedure can improve mobility in the short and long term. The recommendation supports NICE's updated interventional procedures guidance from 2010, which advised doctors that the procedure is safe and can improve spasticity specifically for people with cerebral palsy, which is the most common condition associated with spasticity. Around 80% of the 110,000 people with the condition are believed to have a spastic motor impairment.

Dr Paul Eunson, a consultant paediatric neurologist who chaired the group of guideline developers said: “Selective dorsal rhizotomy has been shown to improve the walking ability of children who have spasticity, but there is still great uncertainty regarding how well the procedure can maintain these improvements in the long term and through to adult life.

“The guideline advises doctors to enter all patients onto a national programme if they are assessed for the procedure, regardless of whether or not SDR is actually performed. “They should use consistent measures to assess how well the procedure works including muscle tone, walking ability, neurological impairment and measures of quality of life. These assessments should continue throughout childhood into adult life.

“As SDR is an irreversible procedure, having structured clinical research is essential as it will allow doctors, patients and their families or carers to continue to make informed decisions about their treatment options.”

Ends

Notes to Editors

About the clinical guideline

1. For further information about NICE clinical guideline 145 on “the management of spasticity and co-existing motor brain disorders and their early musculoskeletal complications”, please visit: www.nice.org.uk/CG145. This link will be live from 00.01 on Wednesday 25 July 2012. Embargoed copies are available on request from the press office.

2. The guideline covers the care of patients from birth up until their nineteenth birthday.

3. Orthoses are devices that fit onto the body and can help improve posture, walking, the position of the limbs when lying, sitting or standing, or using the arms, wrists and hands.

4. Continuous pump-administered intrathecal baclofen involves implanting a small pump close to the patient's waist, which slowly injects the drug baclofen into the spinal cord through a small tube. It is more effective at reducing spasticity and the problems it can cause than oral baclofen, and has fewer side effects.

5. Selective dorsal rhizotomy is a major surgical procedure that aims to improve walking. It involves cutting selected nerves in the lower spine to reduce spasticity. In 2010, NICE published interventional procedures guidance on the safety and efficacy of this procedure for cerebral palsy, which updated a previous version from 2006. For further information about this, please visit: www.nice.org.uk/newsroom/pressreleases/NICEUpdatesAdviceOnCerebralPalsyOperation.jsp

6. Cerebral palsy is the most common condition associated with spasticity; around 80% of the 110,000 people with the condition are believed to have a spastic motor impairment.

About NICE

1. The National Institute for Health and Care Excellence (NICE) is the independent organisation responsible for providing national guidance and standards on the promotion of good health and the prevention and treatment of ill health

2. NICE produces guidance in three areas of health:

• public health - guidance on the promotion of good health and the prevention of ill health for those working in the NHS, local authorities and the wider public and voluntary sector
• health technologies - guidance on the use of new and existing medicines, treatments, medical technologies (including devices and diagnostics) and procedures within the NHS
• clinical practice - guidance on the appropriate treatment and care of people with specific diseases and conditions within the NHS.

3. NICE produces standards for patient care:

• quality standards - these reflect the very best in high quality patient care, to help healthcare practitioners and commissioners of care deliver excellent services
• Quality and Outcomes Framework - NICE develops the clinical and health improvement indicators in the QOF, the Department of Health scheme which rewards GPs for how well they care for patients

4. NICE provides advice and support on putting NICE guidance and standards into practice through its implementation programme, and it collates and accredits high quality health guidance, research and information to help health professionals deliver the best patient care through NHS Evidence.