Call for action to prevent serious health problems and even premature death for severely disabled people

Tuesday 11 October 2011

New campaign launches to raise awareness of the importance of good postural care for thousands of people with multiple disabilities.

A national campaign to raise awareness of the importance of good postural care for thousands of people with multiple disabilities, has been launched today by The Postural Care Action Group.  The group is made up of organisations including Mencap, PAMIS, Postural Care Skills, the Chartered Society of Physiotherapy, the College of Occupational Therapists and the Royal College of Nursing.

The Postural Care Action Group is calling for better support to prevent unnecessary body distortion and to protect the body shape of people with multiple disabilities, for example those with profound and multiple learning disabilities.  Health issues that can result from body distortion include spinal scoliosis, difficulty breathing, and pressure on internal organs.

The campaign is focusing on raising awareness about the postural care needs of people with multiple disabilities, but there are many other people who find it hard to move who could also potentially benefit from better access to postural care. For example, people with spinal injuries, people with multiple sclerosis, people who are temporarily immobilised due to illness or surgery, and some older people.

Beverley Dawkins OBE, national officer for profound and multiple learning disabilities at Mencap, said:

People often assume that body shape distortion is inevitable for people with multiple disabilities, but that is not actually the case.  With correct positioning, body shape distortion is preventable and can even be corrected later in life. Failure to protect body shape can have serious health consequences.  It can even result in premature death.

The action group is calling for the NHS to offer a clear plan for all people with multiple disabilities to protect their body shape.  This includes professionals working with families to identify people who have, or are likely to develop, postural care needs; assessment using measurements of body symmetry; development of postural care plans; and provision of training and equipment.

In 2010, it was recommended in a report commissioned by the Department of Health[1] that the NHS should provide health services to adults with profound and multiple learning disabilities which focus on the protection of body shape.  Postural care services have clear benefits for the health and well-being of individuals and they reduce the need for invasive surgical procedures, yet provision of this type of service is limited across the UK.

A booklet and a film have been produced to support the campaign. The resources use real life stories to show how training, information and funding for equipment can be used to ensure good postural care.

Jenny Whinnett, whose son, Craig, had profound and multiple learning disabilities, said:

Over time, we found out about sleep systems and did some training. Once you have all the information, training and a simple understanding of the body, it all suddenly makes sense.  From when we got the training, we didn’t realise how little time we had left with  Craig. There’s no doubt in my mind that his life was shortened because of his body shape. That is why it is so important that other families find out about postural care.

Download the booklet and watch the film at www.mencap.org.uk/posturalcare

-ENDS-

For further information, interviews or case studies, please contact Eleanor Bradstreet on 020 7696 6937 email Eleanor.Bradstreet@mencap.org.uk or 07770 656 659, if calling out of hours.

Notes to editor

• About The Postural Action Group

The Postural Care Action Group is a group of organisations and individuals working to raise awareness about the importance of protecting body shape. It includes:

• Organisations:

The Chartered Society of Physiotherapy (CSP)

The College of Occupational Therapists (COT)

Inclusion North

Mencap

PAMIS

Partners in Policymaking

Postural Care Skills

Potential Futures

The Royal College of Nursing (RCN)

Simple Stuff Works

University of Central Lancashire (UCLAN)

• Individuals:

Janet Cobb – independent consultant

Elspeth Dixon – parent, and learning disability specialist physiotherapist

John and Liz Goldsmith

Bas Jansen - physiotherapist

Mike and Julie Ormian - family carers

Rebecca Ormian - PMLD champion

• About Mencap

There are 1.5 million people with a learning disability in the UK. Mencap works to support people with a learning disability and their families and carers by fighting to change laws and improve services and access to education, employment and leisure facilities. Mencap supports thousands of people with a learning disability to live their lives the way they want.

We are also one of the largest providers of services, information and advice for people with a learning disability across England, Northern Ireland and Wales.  People with a learning disability and their carers can find out more about our services by calling Mencap Direct on 0300 333 111 or by visiting www.mencap.org.uk.

• About learning disability

A learning disability is caused by the way the brain develops before, during or shortly after birth. It is always lifelong and affects someone's intellectual and social development. It used to be called mental handicap but this term is outdated and offensive. Learning disability is NOT a mental illness.

The term learning difficulty is often incorrectly used interchangeably with learning disability.