12th September BIRMINGHAM
For too long many people with profound and multiple learning disabilities, neurological conditions or a movement difficulty have lived with discomfort and pain due to body shape distortions and lack of good postural care support.
Changing Our Lives is planning to host a national level conference in September to focus on postural care and we want to see a national level response to an issue that if tackled consistently around the country would have a big impact on people’s quality of life.
Able-bodied people can easily change their posture if they are uncomfortable. But people with neurological conditions or profound and multiple learning disabilities (PMLD) don’t have that option. When they feel uncomfortable they are unable to move themselves, and may not be able to tell others they need help. As a result, they are at risk of developing postural problems and body shape distortions and problems such as hip dislocation, scoliosis, pressure on internal organs, pain, difficulties with breathing, digestion and eating and drinking, and even premature death.
Body shape distortion is not inevitable for people with neurological conditions or multiple disabilities. With correct positioning, body shape distortion is preventable and can even be corrected later in life.
The right postural care, throughout the day, can maintain or improve body shape and physical ability. The earlier the intervention, the better – but it is never too late to start protecting and restoring someone’s body shape. Costly, and stressful, surgical interventions can also be avoided.
Key reports, such as Healthcare for All (Michael, 2008) Raising our Sights (Mansell 2010) and Confidential Inquiry into the Premature Deaths of People with a Learning Disability (Bristol University 2011) have recommended that the NHS ensure that there is good quality, preventative postural care services in each local area.
However, the provision of good postural care support remains patchy across the country, with examples of good practice, but also concerns about a complete lack of support in some areas. Families often experience inconsistent support and conflicting advise, inconsistent support through transition into adult services, lack of personalised equipment, lack of expertise in neurological conditions and how they affect body shape, and low expectations from professionals about outcomes. As one family carer said:
“We have been offered equipment and told it isn’t right but it is all they have; we have been advised to use a wheelchair for our daughter at home instead of appropriate chairs; we have been told that no amount of therapy will make a difference; we have faced policies that deny people the right to maintain their skills and instead disable them. On many occasions we have felt like second-class citizens, which is completely demoralising.
We have also had some excellent support from individual professionals who have had the knowledge and expertise that has helped us stay strong and maintain a therapeutic approach and minimise medical intervention.
This is about people’s human rights. People with disabilities, their families and carers should not be pitched in battle with the very organisations that are there to support them. It is short-sighted to deny therapy and equipment on the grounds of cost. It also violates the human rights of the disabled person. Therapy that rehabilitates, and equipment that increases function, has a dramatic impact on a person’s outcomes and life experience.”
This conference is bringing together key national figures to highlight the need for change, identify what is needed and commit to acting to ensure that people with multiple disabilities do not suffer any more from health problems that are preventable.
- Chris Hatton – Professor of Psychology, Centre for Disability Research, at Lancaster University (UK)
- Jenny Whinet – Family Carer
- Anna Marriott – Improving Health and Lives Learning Disabilities Observatory (iHal) project manager
- Sarah Clayton – Simple Stuff Works Associates Ltd (a family run organisation with a passion for protection of body shape)
- Joanna Grace – The Sensory Stories Project
- Adam Hoare – Red Embedded Systems
- Suzanne Carter – Physiotherapist Mid Yorkshire Hospitals NHS Trust
- Gail Russell – Independent Occupational Therapist and Seating Specialist
What do we want?
- To challenge the assumption that body shape distortion is inevitable for people with multiple disabilities or movement difficulties
- To raise awareness of the issues around protecting body shape, the serious consequences for people if this isn’t done, and current best practice
- All people with multiple disabilities to get the support they need to protect their body shape, 24 hours a day.
This promises to be a very exciting conference, which finally spearheads the shift needed so that people with multiple disabilities receive the support they need to maintain their body shape and live their lives free from unnecessary pain and suffering.