Guidance

Postural care services: reasonable adjustments case studies

Published 8 May 2018

Below are some examples of where services have worked to make changes to their systems and pathways or to develop resources with the aim of improving outcomes for people with learning disabilities and postural care needs.

Developing a multidisciplinary postural care service

The development of a postural care service in Wakefield began in 2004. A business case was put forward for equipment, training and additional staff and the funding for this was provided. The team started measuring body shape with basic equipment and they did hip audits to identify children who were in need of postural care. Since then they have established a postural care pathway which provides a robust way of ensuring that children’s postural needs are met.

One of the most important factors to the success of this work is collaborative, multidisciplinary team-working that is inclusive of families.

1. Family carers are viewed as crucial to the delivery of good postural care. Training and education is provided and there are also parent support groups. Efficient communication between home and school is vital.
2. The orthopaedic consultant set up joint paediatric or orthopaedic monthly clinics initially and these are now run weekly where they are needed, for example in special schools. If surgery is necessary then dates are set together to ensure rehabilitation is available. The present orthopaedic consultant is developing a business case for an in-house Botox clinic.
3. Physiotherapists are trained to make non-medical referrals for hip X-rays. They oversee hip surveillance and complete hip audits every 2 years.
4. The wheelchair service is set up differently in Wakefield to other areas. Therapists employed by the acute trust staff the clinical side of the children’s wheelchair service because they know the children, their families and their needs best. Early use of moulded seating systems is available when necessary (for children under a year) and specialist equipment is provided in a timely manner. The wait for an appointment with the specialist seating clinic is less than a month. The therapists work collaboratively with the experienced engineers.
5. Paediatric commissioners have developed strong relationships with commissioners who are very supportive of the postural care work. Commissioners understand the benefits of an early intervention service which focuses on prevention rather than treatment or rehabilitation. The cost benefits of prevention of dislocations and scoliosis are seen through reduced surgical intervention and medication for pain management. This has resulted in increased equipment budgets. The commissioning team have shown their willingness to share their work and experience to support other areas to develop their services.
6. The Integrated Community Equipment Store have a dedicated paediatric equipment budget and generally children get the equipment they need in a timely manner, including night-time positioning equipment.
7. Special schools have staff who are well trained and their own postural care lead. All children on the postural care pathway have a photographic postural care plan which is followed daily. These plans include the use of standing frames and frequent changes of position using specialist seating, wedges for lying face down and side lying supports as required.
8. Respite care services receive on-going training and each respite care facility has a qualified, accredited postural care lead who ensures continuity of postural care programmes for children in their setting. They also support parents to use sleep systems with their children.
9. The Postural Care Interest Group is a small working group of occupational therapists and physiotherapists from across the Trust. They meet every few months to ensure the sustainability of the postural care service and to explore what else is needed.
10. The measuring clinics take place in school or at the hospital. All children at risk of body distortion are measured at least yearly using the Goldsmiths Indices. It is critical to protect normal chest dimensions as reduced internal capacity of the abdomen and thorax increase the risk of respiratory disease, constipation and reflux.

The success of the work in Wakefield is evidenced by improved physical results seen in the children on the postural care pathway. Additionally, the results from their last audit in 2012 showed that in Wakefield they had no children or young people with complex needs with a dislocated hip (other than one person who moved into the area with existing bilateral hip dislocations). This was in contrast to 24 children with hip dislocations in a nearby comparable area, which does not have the same postural care pathway.

Key to the success of the work has been the holistic approach, with families, agencies and professionals working together to provide good quality 24-hour postural care for those who need it. Many of the team members have been in post for a significant length of time and this has been a crucial factor in enabling the establishment of close working relationships.

For further information contact Suzanne Carter.

Seeking funding for a postural care service

In Newcastle-Upon-Tyne Hospitals Trust, the community paediatric team wanted to set up a postural care service. There was not the capacity to provide this service within existing resources, so a band 7 physiotherapist sought funding for this from a quality and improvement fund. She applied for additional support to give dedicated time to set up a postural management service for children with disabilities in Newcastle. More specifically, they requested a band 7 physiotherapist and a band 4 technical instructor for half a day per week for 12 months.

The funding application was extensive and included:

• a summary of the project with a justification for the request
• the aims of the project
• information about the work that had led up to the project
• an outline plan of how the time would be used
• why they had chosen to work with this particular group of children
• how they would evaluate its success
• how the learning from it would be shared

This application was successful and the expectations are that following this period this work will be absorbed into business as usual. Newcastle Upon Tyne Hospital’s Trust have also requested that the team provide a written report and present the work at the foundation’s committee and other relevant conferences to ensure the project is publicised.

For further information, contact Frances Slowie

The value of working with families

Promoting a more inclusive society (PAMIS) is an organisation in Scotland that works solely with people with profound and multiple learning disabilities and their families for a better life. Due to the level of physical disabilities that a number of their families face, body shape distortion is something which is prevalent. One family member attended a training session on postural care for her son’s care team and shared her experience with PAMIS and requested that, as an organisation, they support families in a similar situation by offering them the same training opportunity: Read Craig’s experience and the postural care campaign 2011.

Through their Family Support Service, they have supported over 80 families and professionals to attend postural care training run by Postural Care Skills UK/Simple Stuff Works since 2009. Feedback has always been exceptionally positive, with families in particular feeling a range of emotions. One question consistently raised is “Why didn’t I know about this earlier?”

In 2013, within the NHS Lanarkshire area, PAMIS secured funding to host another workshop for carers to undergo the accreditation aspect of the course and create an information resource for families. To oversee the work, a Postural Management Planning Group (PMPG) was created with membership from family carers, PAMIS and physiotherapists (representing Children and Young People and Learning Disability teams). Several families who had completed the 2 day accredited postural care training and felt knowledgeable and confident in supporting their own child’s body shape were encouraged to identify themselves as postural care champions. These carers were, and are, invaluable in sharing their story and experience of postural care.

Thanks to the success of the initial year of funding, they were able to secure a further year, which gave them time to train more families to an accredited level and develop a film. Together with the PMPG, they oversaw this work but brought on board occupational therapists representing Children and Young People and Learning Disability. They also developed the Postural Care Champion’s role, helping these particular carers to develop their presentation skills, create presentations and have materials to help them share their story (Morrison and all, 2016).

Within the NHS Grampian area, the initial family carer had gone on to become a trainer herself, secure funding through Carers Information Strategy and work in partnership with a physiotherapist to deliver postural care accredited training to more families and professionals in the area.

Within the NHS Greater Glasgow and Clyde area, they were again successful in applying for funding over 2 consecutive years to host 2 postural care training sessions being delivered by Simple Stuff Works.

Despite the success of these local area developments, they recognised there was a need for a coordinated, consistent Scotland-wide approach with strategic support giving guidance to practitioners on what type of information should be available and when and how it should be shared. PAMIS sought support from the Keys to Life strategy team (Scottish Government learning disability strategy) gaining a small funding grant for one year to:

• identify stakeholders
• create partnerships
• develop our postural care champion role
• provide opportunity to create more postural care trainers within Scotland
• create a national postural care reference group
• begin to develop a Scottish postural care strategy

Through this, 27 people attended postural care ‘train the trainer’ training from a variety of backgrounds such as allied health professionals, early years workers, personal assistants and family carers. Having family carers as trainers is incredibly important for many reasons: a co-produced approach to learning and sharing of information is essential for clear messages about body shape protection to be heard. The family carer is empowered in being able to share quality information and their experiences are valued by being recognised as an equal partner.

An example of good practice

A strong commitment from NHS Greater Glasgow and Clyde physiotherapists, both children and young people and community learning disability teams, has enabled the area to develop a model of sharing information with families and professionals by seeing postural care champions (family carers) as a key component to their training team.

The children and young people team have visited school parent’s evenings to engage directly with families receiving postural care. Having postural care champions present has had a positive impact on these events as photographs and films of individuals experiences can be shared with new families. This has been particularly successful in getting families along to more informative awareness raising sessions.

The community learning disability team has hosted postural care awareness-raising sessions within several day centre environments, with a postural care champion sharing their experience at each event. On evaluation, the family story always has a positive response demonstrating the impact and benefit in learning directly from family carers.

PAMIS has created a learning hub developed initially as a means to support those who completed the postural care training but has also been of interest to a range of other people and will continue to develop.

A range of stakeholders have been interested in joining their national reference group. Due to geographical spread and the number of people interested, it has been difficult for this group to create momentum and they are now looking at how best to progress - potentially with a smaller core group and feedback to the larger interested group for comment.

In August 2017, they launched postural care film as a national resource and used this as an opportunity to begin the process of creating a strategy. With support from Scottish Government and a range of NHS boards and family carers, they have begun the conversation of what a strategy should look like, who needs to be involved and what the vision for the future is. The outcome of their discussions has confirmed that a strategy is welcomed and that everyone involved is committed to achieving their aim of stopping body shape distortion.

For further information contact Michelle Morrison.

Postural management – provider perspectives

Hollybank Trust provides residential accommodation in a range of settings for people aged 5 and over. Most of the people they support have profound and multiple learning disabilities. The physiotherapy department is made up of 3 physiotherapists and 4 physiotherapy assistants and they take a 24-hour postural management approach.

All new staff working at Hollybank complete a mandatory 4-day induction before they begin work which includes an introduction to postural management delivered by a physiotherapist that covers:

• understanding destructive postures and the effect on the body
• introduction to the 24-hour postural management approach
• introduction to the equipment used in 24-hour postural management

Within each home, physiotherapists deliver more specific group training as needed. This can be on broad range of topics but usually, the training focuses on postural management or equipment training. Physiotherapists and assistants can deliver one-to-one training as required.

Each individual at Hollybank has a care plan document which holds detailed information on their general care and more detailed information on their postural care needs. Each need has a risk assessment, care plan and information sheet. The information sheet holds instructions on how to use specific equipment and who to contact for repairs. Equipment includes sleep systems, wheelchairs, orthotics and other mobility equipment, standers and walkers.

When new residents come for assessment at Hollybank the equipment they require is included in the costings for the placement. However, it can be more difficult to fund new equipment for current residents. Potential routes are the funding authority, self-funding, the exceptional case committee or charitable funding.

Hollybank have found it hard to identify an outcome measure that is suitable for the people they support. Postural assessments are the tool that they find most useful in demonstrating effectiveness, as maintenance of posture is a good outcome. However, there is a drive towards demonstrating improvements and so they are currently exploring the use of the goal attainment scale to identify personalised outcome measures.

For further information contact Megan Gascoigne.

Care Management Group (CMG) is a learning disability provider that specialises in care for people with complex needs. They currently support almost 100 people with profound and multiple learning disabilities across a number of their services. In order to meet their postural needs, the organisation has employed an independent physiotherapist to deliver regional training on postural care. They have also provided additional bespoke education which focuses on individual needs.

Other initiatives to help meet the postural care needs of the people they support include:

• detailed postural care protocols or pictorial guidelines that sit alongside moving and handling plans
• training for support staff to undertake passive movement exercises (in accordance with robust guidelines)
• commissioning an independent physiotherapist to provide passive movement when it is not appropriate for this to be carried out by support staff
• hydrotherapy pool sessions (with and without physiotherapist present, but all with a health screening and risk management plan in place)
• ongoing support and advice regarding postural care, pressure area care and moving and handling

As training is a vital part of their postural care approach they aim to start offering support staff the OCN accredited Level 2 ‘Postural Care’ module in collaboration with Simple Stuff Works. A number of their staff have completed the Train the Trainer course in order to enable this to be ongoing within the organisation.

Nurses within CMG are currently piloting a postural care profile. This is a quick reference guide to an individual’s postural positioning. It will sit alongside the person’s hospital passport and give an overview of:

• how to position the person in their wheelchair
• how to position the person in their sleep system
• any signs to look out for that would raise concerns

List 1 in the guidance ‘Resources’ has a copy of the template for this and you can see an anonymised example of a completed profile online.

At a strategic level, CMG host a quarterly ‘people with profound and multiple learning disabilities’ forum which has a focus on health care needs, postural care, communication, community participation, social inclusion and engaging in meaningful activities. The forum provides a place to share good practice, develop new initiatives and advocate for people.

CMG are an active part of the working group which is developing a national postural care strategy. The organisation plans to implement a company-wide postural care strategy in line with this.

For further information please contact Michael Fullerton.

Using objective outcomes to assess effectiveness of interventions

The Liverpool Postural Care Pathway (LPCP) is a collaborative multi agency model for children with 24-hour postural care needs. The Goldsmith Indices of Body Symmetry (GIoBS) is one of the annual outcome measures that they use to look at how the 24-hour postural care plans are working. This is a set of validated, non-invasive, objective measurements of body symmetry (Goldsmith and others, 1992). These measurements are entered into a database along with other data including information about hip X-rays and hip migration. Comparison with previous years is used to guide the level and area of postural care intervention provided for individuals.

The effectiveness of the pathway was evaluated by looking at the data on their primary outcome measure: the GIoBS. At the time of the evaluation there were 203 children on the Postural Care Pathway. Of these, 127 had at least 2 GIoBS measurements and so were included in the evaluation.

For some individuals the changes in their body shape are irreversible and therefore the goal of postural care will be to prevent further distortion, rather than working towards restoration of body shape (Hill and Goldsmith, 2010). Therefore, interventions should be viewed as a success if postural problems are slowed down or stopped. The data showed that 84% of people who had night-time positioning equipment showed maintenance or improvement in their body symmetry as measured using the GIoBS. For those without equipment, 79% showed maintenance or improvement.

These outcomes demonstrate the effectiveness of the LPCP. Longitudinal analysis of outcomes from people on LPCP is underway; these outcomes include quality of life, hip radiography and hip clinical examinations.

A more detailed analysis was undertaken on the data of 5 children who have complex postural needs and who receive regular support from the Community Respiratory Physiotherapy Service (CRPS). Measurements of their respiratory function and quality of life were compared against GIoBS and this was suggestive of a possible trend between significant postural care and respiratory needs. Those whose chest shape symmetry deteriorated had higher reported respiratory symptom scores or increased respiratory hospital admissions.

This has led to the introduction of risk screening tools into the pathway in order to identify and monitor respiratory needs. LPCP now also work collaboratively with respiratory colleagues.

For further information contact Joshua Birch.

The importance of training as part of a postural care service

Following participation in a ‘Skills for Health Project ‘ with Postural Care CIC (now part of Simple Stuff Works), the therapy team at Pennine Care NHS Foundation Trust worked to set up a 24-hour postural service, particularly looking at the provision of nighttime equipment. One of the main barriers was to secure funding for nighttime equipment. Eventually, a funding stream through integrated health and social care was established by:

• raising awareness
• presenting at heads of service sessions
• using outcomes measures such as the Goldsmith indices of body symmetry (AMI)
• introducing informal systems to demonstrate effectiveness

There is now a postural care pathway for night time equipment for all children and young people who need this care (over 40 children). They continue on the postural pathway until they are aged19 and this means:

• they are measured annually using the Goldsmith Indices of Body Symmetry
• therapists respond to any noted changes in body shape
• the therapist liaises with the parents and carers and reviews and updates any nighttime equipment needs

They have now combined body shape measurements with the new Cerebral Palsy Integrated Pathway Scotland (CPIPS) assessment - a nationwide initiative that is a hip surveillance assessment. The outcomes provide much needed evidence for commissioners that can support the need for continued funding of equipment.

Training has been a vital part of this work in order to ensure that parents, carers, therapists, nurses and education and support staff are equipped with the knowledge and skills necessary to not only to identify any concerns about asymmetrical body shape but also to know how to address it successfully. Training has been provided at different levels:

1. Accredited courses: since training, a postural care tutor has delivered the training promoted in the initial Skills for Health project. She has run 2 to 3 courses a year for the last 6 years, mainly the 2-day postural Awareness course and also a course in using the Goldsmith Indices of body symmetry assessment tool. Both of these courses are accredited by the Open College Network through an organisation called Simple Stuff Works. All of the Therapy staff within the Trafford Children’s department have completed the 2 day course. These courses are open to anyone who wishes to attend and over the last few years they have been funded through the Trust’s Learning and Development department, which means anyone who works for Pennine Care can access them at no cost to themselves or their department. The feedback from these has been very encouraging.
2. Other training takes place in an informal way at home visits with families. This has involved using skeletons, balloons and practical examples alongside YouTube videos and PowerPoint presentations. The approach helps ensure parents understand the importance of 24-hour postural care as an integral part of therapy intervention for their child. Involving and training parents and carers in postural care improves the transition process as it equips them with the knowledge they need to raise any future issues and concerns about an individual’s posture and body shape.
3. Short information sessions have been delivered for nursing teams and educational staff. Further sessions are planned for the Early Intervention Team and community paediatric consultants.
4. Peer support has also been an integral part of this programme. A local postural care network group was set up for physiotherapists and occupational therapists working in both adult and children’s services. This has allowed the sharing of best practice, such as postural pathways, assessments and outcome measures. This culminated in the Network group presenting at the Association of Paediatric Physiotherapists Specialists Interest group, again promoting how to set up and move forwards with postural care.
5. Often therapists will come for an informal visit to the department to see the set-up of the service with a view to implementing a similar service.

For further information contact Ingrid Stanfield.

Leeds and York Partnership NHS Foundation Trust identified that, following a restructuring of the physiotherapy service, there were problems with postural care for people with learning disabilities living in their supported living services. The change in the referral system meant that supporters had to notice the issue and make an appropriate referral. Subsequently, the referral rate dropped and there was an increase in critical incidents that were linked to poor postural care.

The trust seconded a senior physiotherapist to work for 6 months across its learning disability homes. She was tasked with increasing the postural management skills of the staff teams. As her workload was dedicated to this work she was able to spend time in the homes in order to learn more about them which enabled her to tailor the training package she developed. This was delivered to all staff in the supported living service (133 in total).

Following the training, the staff members showed increased awareness of the postural needs of the people they supported and this was evident in the threefold increase in referrals to the specialist service. They also set up a system of postural care champions within each home to ensure a continued emphasis on the importance of good postural care.

Support staff are vital to the delivery of good postural care and so there is a need for relevant training for this group. However, there is a high turnover of support staff so this needs to be funded on an ongoing basis.

For further information, contact Rebecca Vickers.

Enabling the use of sleep systems in acute hospitals

In Derbyshire Healthcare Foundation Trust, the physiotherapists in the community learning disability team were concerned that when the people they supported were admitted to hospital they either had no access to postural care or that equipment often went missing if they took their own sleep systems in. This was particularly unacceptable when the person or their family had paid for the equipment. People who spent lengthy periods in hospital without using their sleep systems had altered shape on discharge often requiring re-moulding for their chairs at a cost. They were sometimes in severe discomfort from not having been supported correctly in bed.

One of the physiotherapists worked with the learning disability liaison nurse at the Royal Derby Hospital to put forward a case of need for the hospital to have its own systems available for anyone to use. The hospital agreed to fund 2 full systems. They selected a system which covers most postural needs as you can position someone lying on their back or on their side. The systems consist of:

• a full mattress
• a horse-shoe shaped roll ( to go under knees)
• a basic roll (to go between knees)
• 4 medium brackets and 2 large brackets

They then worked with a company that manufacture and supply postural care equipment to re-design their systems so that they would meet the stringent infection control regulations. These regulations require all equipment to have sealed seams so fluids cannot penetrate and anything that has to go for laundry has to be able to cope with exceptionally high temperatures. For this reason, the hospital decided to use normal hospital cotton sheets, rather than the stretchy sheets provided. They acknowledge this is not ideal but feel it is a good compromise. These systems are now available for sale to people needing to meet this standard of infection control.

The physiotherapist and liaison nurse devised a form for people to describe how a patient should be positioned and request the equipment needed. They also ran training sessions for the physiotherapists and occupational therapists working on the wards as they over-see postural care and can pass on information to the nursing staff.

The systems have been a success, as people now have access to postural support while they are in hospital. These systems were originally requested for adults with a learning disability but they have been used in Paediatrics, neurology, head injury and on the elderly care wards. They are reported as being particularly useful for older people who may have some confusion, as the feeling of being “held” seems to help some people sleep better.

For further information, contact Debbi Cook.

Using sensory stories to aid positioning

Sensory stories are a wonderful resource, fun for people of all ages and abilities to share together. A sensory story consists of concise text, typically less than 10 sentences with rich and relevant sensory experiences that engage the story experiencer. They can be particularly beneficial to individuals with profound and multiple learning disabilities. The narrative aspect of the story can be accessed through the words alone, the stimuli alone, or a combination of both.

Night time positioning is an important aspect of good postural care. Getting used to a new nighttime position can take time, practice and patience. Supporting someone to learn to lie comfortably on their back can be challenging but there are recognised benefits. Sensory stories can be used to form part of a bedtime routine that incorporates good postural care.

List 2 in the guidance ‘Resources’ contains links to 3 sensory stories designed to support the delivery of good postural care. The stories are designed to be used in conjunction with the postural advice from a therapist. As the narrator moves through the story there are cues for the postural care nighttime routine. There is advice on how to gather or create the sensory stimuli needed for the stories. The stories can also be used during the day to help the person practice a new position before this is introduced at night.

For further information please contact Joanna Grace through the Sensory Projects website.

Case studies about supporting individuals’ needs

The case studies below are examples we have been sent by professionals and family carers. They describe how support was provided to an individual and the types of reasonable adjustments that were made. For reasons of anonymity we have changed some details, such as gender and age of the individuals and we are not linking these case studies to the services, but we would like to thank the following teams for their contributions:

• Bolton Community Learning Disability Team
• Care Management Group
• Lincolnshire Partnership NHS Foundation Trust
• Merton Team for People with Learning Disabilities and Complex Needs

Working with an individual and her family to introduce a postural care programme

Isobel, a young woman with learning disabilities, dystonic athetoid cerebral palsy and sensory peripheral neuropathy, was referred to her local postural clinic. Isobel had a series of issues with dystonia in her legs. After her right hip dislocated 4 years previously she had surgical intervention to improve the position of her hip joint. Two years after that she also had surgery on her left Achilles tendon to improve her foot position and passive ankle movement. Isobel lives at home with parents and some additional support. She had not been using a postural sleep system and she preferred to sleep on her left side.

Following assessment at the postural clinic it was clear that her current sleeping position was putting a lot of stress on her right hip which had previously dislocated and was at a high risk of doing so again if the side lying position was maintained. A daily home stretching programme was provided for Isobel’s arms and legs to improve range of movement and prevent joint stiffness. Although the exercises had to be completed by her family and carers the exercises were adapted to allow Isobel to be as active and involved in them as possible.

Isobel needed to get used to lying on her back in a better postural alignment and to having postural support to prevent her right hip from dislocating and spinal deformity developing. This was a challenge, but she slowly became used to lying on her back. This was achieved with the encouragement of her family and by giving her accessible information about the health risks of her current position. They used animated videos and photographs showing her alignment with and without support to help her understand this.

Isobel was followed up and reviewed over the next 2 years, with the exercise programme and support adjusted as required. This included the introduction of a T roll to help her right hip relax further, allowing the head of the femur to drop into the socket more comfortably. During this time, she was referred for Botox injections into her right hip adductors and hamstrings to reduce muscle tightness, especially at night.

Since having the injections (every 6 months) alongside twice daily stretching exercises she has been able to comfortably sleep through the night and the range of movement in her legs has improved and has continued to improve on each yearly review. Spinal symmetry has slightly improved and chest shape remains conventional.

Isobel continues to be reviewed, as following an Orthopaedic consultation it was agreed that a tendon release procedure for her right inner hip may alleviate her discomfort. Following this procedure, there is potential for her sleep system to be adjusted further to help spinal symmetry improve even more.

Isobel’s case illustrates the lengthy nature of this sort of intervention. Therapists are often under pressure to discharge a person from a service following treatment and this may not be appropriate when someone needs a long-term intervention.

Overcoming the challenges of getting the right equipment

The team worked to support a young man in his 20s who had cerebral palsy, dystonia, significant and severe lumber lordosis and a mild learning disability who lived with his parents and siblings. He had sudden onset of severe hip and back pain. This was causing him significant distress and physical problems. He became fearful of eating and drinking after 2 episodes of choking and lost a lot of weight and areas of pressure were beginning to become apparent. Due to the pain he was in, he became unable to participate in meaningful activity and his mental health was deteriorating. Being moved was very painful for him and so he wanted to stay in his wheelchair all day which limited personal care and toileting. He was retaining his urine which put him at risk of infection.

He already had a wheelchair and sleep system in place but had not accepted a posturally supportive armchair. It was noted that his family struggle to accept new equipment and he felt more mobile in his wheelchair. However, an assessment showed that the cause of his pain was the amount of time he was spending in his wheelchair, which was negatively impacting on his spinal position.

A holistic approach was taken which included:

• the learning disability nurse and the physio helped him to access GP services for pain management and he was prescribed fentanyl patches
• he was referred to Orthopaedics, the wheelchair clinic, mainstream dietician service and to the learning disability team for nursing and speech and language therapy (SaLT) input
• education and advice was given to him and his family around the importance of positional change and an alternative to his wheelchair
• the OT and the physio arranged a specialist seating assessment and the trial of an appropriate specialist armchair
• the OT and the physio worked with wheelchair services to explain and rectify issues with the chair. This improved his position and therefore decreased his pain
• the OT provided equipment to support him with eating and drinking while in his wheelchair and armchair
• the SaLT carried out a dysphagia assessment to ensure safe eating and drinking (on the same day as the referral). They then gave advice and provided thickener for fluids
• the dietician gave advice and support around appropriate nutritional supplements and fortification of food. This is supported via the learning disability weight clinic

The benefits from the specialist armchair were immediately apparent, as his pain decreased once he was correctly positioned. However, this had been provided on a short-term loan and there was a struggle to get funding. An application to the local CCG via the effective use of resources team was refused. It was then taken to the Independent Living/Equipment Service and, after a lengthy process, was agreed as a special order based on urgent need. Without this armchair there could potentially have been further deterioration of posture, which would have resulted in significantly increased health and social care costs.

The outcomes from this approach are:

• the individual is now pain free
• he can access the community with the support of his personal assistant and participate in meaningful activity
• he is enjoying his food again and slowly gaining weight
• there have been no further choking episodes *pressure concerns are resolving
• the individual and his family now know more about his condition and are more willing to accept input and equipment that is needed
• they can follow treatment advice which will reduce the risk of this type of episode reoccurring
• the changes in postural management have reduced his pain and currently he does not need orthopaedic intervention – this is expensive and potentially risky
• his level of analgesia is being reduced

The input for this individual has highlighted both the instant and long-term benefits of 24-hour postural management. To achieve this, it was necessary to work collaboratively with the individual, his family and supporters. The greatest barrier to this type of work is the challenge of securing funding; postural management equipment is not considered essential equipment within the Adult service despite the potential financial benefits which can be realised through reduced hospital admissions and pressure ulcer prevention.

Enabling successful use of a sleep system in combination with a continuous positive airway pressure (CPAP) machine

A consultant from the Sleep Clinic requested input from the physiotherapist and occupational therapist from the Community Learning Disabilities Team around optimal positioning for use of a continuous positive airway pressure (CPAP) machine. The referral was for an individual who had severe learning and physical disabilities with complex health needs. When support workers had used the CPAP machine overnight the mask had slipped, resulting in an eye injury. Consequently, the CPAP machine was not now being used overnight.

The therapists reviewed the sleep system and ordered a new component to improve positioning, as well as replacement of some worn parts. This equipment was paid for by Continuing Healthcare (CHC) funding and once it was in place the therapy team set up the new sleep system and provided guidelines for its use and training for support staff. The new system was reviewed prior to CPAP being reintroduced and it was established that there were significant improvements for the individual in terms of position and posture.

The consultant and physiotherapist devised a plan to introduce the use of the CPAP machine gradually, working towards overnight use of it within 3 months. This involved:

• initially trialling the use of the CPAP with the sleep system at times of day when support staff could closely monitor
• use of a monitoring sheet to record observations and any safety concerns
• regular visits from the therapists to review progress and adjust the sleep system and guidelines as needed

The trial went well and the individual could use the CPAP machine for several hours at a time with minimal intervention from support staff. Waking night support was requested via CHC funding and a joint decision (between therapists, CHC and provider organisation) was made to start using the CPAP machine overnight. This was monitored and the therapists provided further training for support staff as needed. The situation will continue to be reviewed by the therapists as adjustments to the sleep system will be needed due to postural changes over time.

The joint working with therapists, Sleep Clinic Consultant, provider services and CHC team has resulted in the safe and effective use of the CPAP machine overnight with the sleep system, as the required positioning has been achieved. The nightly use of the sleep system has contributed to maintaining the individual’s health and wellbeing.

The importance of equipment being right for an individual

Matthew and has a profound and multiple learning disabilities, cerebral palsy and epilepsy, which is well controlled. Matthew moved into a residential home 2 years ago and he settled well. Matthew is wheelchair dependent and reliant on others for all his daily care and needs. He is PEG fed and communicates through eye pointing, facial expressions and body language.

Matthew spends most of the day in his wheelchair, apart from time out on his bed with postural support. Prior to his move, Matthew had a moulded seating system mounted on a tilt-in-space wheelchair base. However, this system did not support him well; he was sitting “on” rather than “in” the seat, his legs were scissoring and without the ankle straps secured he migrated down the chair until he was almost out of it. Matthew was then placed on the Postural Care Pathway and following his first clinic assessment, a copy of their report was sent to the local wheelchair services in support of a review of his seating.

Just over 6 months later, Matthew received his new mould, which was an improvement but was still not totally right for him. He was reviewed by the postural care service and they found that Matthew was not weight bearing through either buttock, the seat was too long and did not accommodate his limited right hip flexion. This meant he was not able to sit fully back and was not sitting comfortably. The outcome of the review was an overall deterioration in body symmetry which it was felt was due to the new moulded seat. A copy of the review report was sent to wheelchair services, who reviewed Matthew again and said he should alternate use of his old and new chairs until he got used to the new system.

Eventually, Matthew attended the wheelchair clinic with the postural care team to try to ensure a better outcome, as by this time he was refusing to go into the new mould and had developed a sore over his right hip. The outcome of this visit was a general agreement that the mould shape was good (length shaved back to allow his to sit into the seat) but it was not soft enough for him. A Foam Carve was then supplied which has memory foam lining to offer extra comfort and protection. The pommel that came with the Foam Carve had to be sent back as it was too wide and hard, causing sores on the inside of his knees, but after being shaved back and covered in a gel, it was gradually reintroduced.

Prior to this intervention Matthew would only tolerate his previous moulded wheelchair for very short periods and became anxious as soon as carers tried to hoist him in. Since the modifications to the pommel, his carers have gradually introduced it and he now tolerates it most of the day. His posture is much improved with it in place. Together with the implementation of an exercise programme and the use of bed positioning supports this has led to an all-round improvement in body symmetry and ranges of joint movement.

At his first annual postural care review, it was found that Matthew was much more comfortable, able to tolerate being seated for lengths of time with the pommel in place and there was an overall improvement in his body symmetry. He is weight bearing through his bottom, ranges of joint movement have improved and he is sitting fully back in the seat with no pressure problems. His general health has also improved; he had only had one chest infection in recent months and he has gained weight.

This case study demonstrates not only the importance of 24-hour postural care, but highlights how lengthy the whole process can be when working with, and being reliant on, other agencies. In Matthew’s case this led to a long delay in him being able to sit comfortably in his wheelchair. This case also shows maintaining someone’s posture is a group effort involving the individual, family, carers, equipment providers, therapists and other agencies.

Managing without personalised equipment

Emma had a full postural control specialised seating system which needed adjusting and this work takes a full day. Emma cannot eat and drink safely without proper support and her mother was concerned about how she would manage without the system. So a Burnett vacuum system was used as a temporary solution. This is pumped up and moulds to the individual’s body shape. This provided adequate support for Emma while the adjustments to her full seating system were done.

If there is no access to a Burnett vacuum system then in this type of situation beanbags could be used as an alternative.

Managing hospital admissions

For Anna, even a short stay in hospital can cause major issues for many weeks afterwards. During one admission she spent a lot of time on the bed and rubbed her ankles on the sheet. Consequently, she got a pressure sore that took some months to heal. This also meant she was not able to use her Ankle Foot Orthoses (AFOs) as these rubbed the pressure sore. This was a nightmare.

Many hospitals do not want wheelchairs in hospital, but Anna now has a hospital admission plan that says she has a physiotherapy plan in place and should be nursed in her postural support wheelchair if possible.

The plan says that Anna needs 24-hour postural management and lists what she has at home:

• standing frame
• wheelchair supportive seating
• comfy chair supportive seating
• orthotics - day and night foot orthoses
• daily exercise programme
• standing transfers with support of 2 support workers and handling belt

During a hospital admission, it is important that as many interventions as possible continue, to prevent her present condition deteriorating or any loss of skills. This is obviously influenced by the medical condition necessitating her admission. The hospital admission plan notes that it may not be possible for the standing frame or comfy chair to go into hospital but that Anna should sit out in her wheelchair as soon as she is medically able and as much as possible. When she is in the wheelchair she should be wearing her day AFOs. These are solid plastic and keep her ankles to right angles.

If her condition allows then her current exercise programme should be carried out daily. For standing transfers, Anna should be wearing AFOs and the handing belt should be used. This requires 2 support workers, one on either side with Anna stepping to her left using her strong leg.

Overnight she should wear her wrist splint and her night-time AFOs, which are lighter than the ones she wears in the day. It is particularly important she wears these at night if she has not been able to stand much in the day as she needs to keep the angle of ankles or she will not be able to stand. In the past a variety of night-time positions have been tried, but with her severe epilepsy Anna has hurt herself during a seizure. Therefore, for Anna it has been decided that if her programme is followed during the day and she wears her splints at night, then she does not need a night positioning system. When she is in hospital she has staff with her at all times and they ensure she is repositioned in the night.

The impact of a pressure ulcer and how it was successfully treated

Oscar has lived in a specialist residential service which supports adults with profound and multiple learning disabilities for 12 years. Oscar has a diagnosis of profound and multiple learning disabilities and has associated complex health needs. He has a scoliosis, a gastrostomy due to a severe dysphagia, gastro-oesophageal reflux disease, ulcerative colitis and obstructive airway disease requiring BiPaP therapy overnight to support breathing and stabilise the airway to prevent the soft tissue from obstructing Oscar’s airway.

Almost one year ago, Oscar had a hospital admission for initially a lower respiratory tract infection, which then developed into an inpatient referral for a Gastroenterology Team review for his gastrostomy stoma site that was sore and leaking. Oscar was kept in so they could explore further treatments and during this prolonged hospital stay he developed a grade 4 pressure ulcer on his right hip.

Once home, Oscar had to stay in bed in a left side lying position to promote healing of the pressure ulcer. He was unable to access his chair due to pain and discomfort, but also due to a risk of further pressure damage to his right hip. Recommendations and subsequent guidelines for staff were produced by Oscar’s physiotherapist.

The pressure ulcer caused pain and discomfort so he was prescribed regular analgesia and staff utilised the DisDAT tool to support recognition of the sometimes subtle signs of pain and discomfort.

Being very social but restricted in his bedroom by a physical issue that was beyond his control had huge effects on Oscar; he became very low in mood and withdrawn. A temporary activity plan was designed to facilitate Oscar’s engagement from the comfort of his own bedroom.

Oscar had a Community Nurse visit him alternate days to change his dressings. Due to his ulcerative colitis requiring immunosuppressants and recent physical ill-health, the pressure sore was slow to heal. Numerous wound dressings were tried including hydrofibre, seaweed, inodine and honey. As there was slow progress, a dressing technology that provides suction which draws out excess fluid from a wound was used. The dressing helps to prevent bacteria from entering the wound. It also improves blood flow to the wound which helps it to heal. In addition to this, the dietitian prescribed a protein supplement (protein aids the body in repairing damaged tissues). To help improve his nutritional status generally, Oscar had a higher concentrate of feed prescribed, but this was administered at a slower rate to minimise risk of reflux and aspiration.

This combination finally proved successful, and Oscar’s pressure ulcer started to show signs of healing. Oscar was able to spend a small fraction of time in his wheelchair; he could come downstairs and socialise more. He even was able to go into the hydrotherapy pool as they had arranged a visit from the community nurses just as he came out of the pool to redress his wound.

As Oscar spent so long in bed he had experienced postural changes and so his physiotherapist, alongside the local wheelchair services, reviewed his posture and wheelchair. They completed a pressure map with his old wheelchair cushion, which showed pressure loading on his right hip. They moulded a new multi-celled air cushion (star cushion) to his new body shape. A repeat pressure map showed the pressure was now well distributed, meaning he was as comfortable as possible and this minimised the risk of further pressure damage.

Additionally, the physiotherapist measured Oscar’s body symmetry using the Goldsmith Indices to get a baseline. It is hoped that with increasing periods in his wheelchair and him getting back to sleeping supine with his sleep system, his body posture will improve. Future measurements using the Goldsmith Indices will provide objective evidence of any improvement.

Almost a year after the formation of the grade 4 pressure ulcer, Oscar is now able to spend the majority of the day in his wheelchair (with regular position changes out of his chair). He no longer requires a pressure relieving mattress and is back in his sleep system and is able to enjoy being out and about.