HEALTHCARE NEW ZEALAND Good afternoon. I am Margaret Goodall and this is my colleague Eleanor Barrett. We are Occupational Therapists and we work for Explore, a transdisciplinary team that was established to provide specialist services to the people who used to live at the Kimberley Centre. I trained at the University of Stellenbosch, South Africa and then worked in Zimbabwe and the UK before moving to NZ 5 years ago. Eleanor trained at Cardiff University Hospital, Wales and worked in the UK for 12 years. She moved to NZ 4 and half years ago.
HEALTHCARE NEW ZEALAND This presentation explores how Jean, not her real name, was supported to move out of her bed so that she could return to two previously enjoyed activities, socialising with flatmates in the living areas of her home and having a shower. In 2006, as part of the de-institutionalisation programme Jean moved from Kimberley centre to a beautiful home that had been designed and built for her and 5 flatmates. One of the repeated objections to and concerns about the closure of the Kimberley Centre was that people with high medical and physical needs, like Jean, could not be cared for adequately in a community setting. Jean’s health and care needs changed over time and the level of support she received and the equipment that she used needed to be adjusted to reflect and accommodate those changes. This presentation illustrates some of the challenges but also the solutions that make complex care at home a real possibility.
HEALTHCARE NEW ZEALAND Jean had San Filipo Syndrome which is a genetic disorder, one of the Mucopolysaccharidoses group, also known as MPS-III. People with San Filippo Syndrome are missing an essential enzyme that breaks down a complex body sugar called heparin sulphate. This sugar slowly builds in the brain and other organs and stops normal development. Onset of symptoms is usually between the ages of 2-6. The syndrome is progressive and global in its effects. At present the principle form of treatment is through symptom management.
HEALTHCARE NEW ZEALAND Jean followed a fairly typical progression of a normal early childhood with signs of learning delay around the age of 6 or 7. She attended local schools until her early teens. Gradual loss of physical ability required the use of a wheelchair by her late teens. At 19 she moved from her parents’ home to the Kimberley centre in Levin. Symptoms continued to progress and she moved to the medical unit because of recurrent chest infections. When she was 40 Jean made another move from Kimberley to a home in the community. When her swallowing deteriorated a Naso-gastric tube was inserted and this was later changed to a Percutaneous Endoscopic Gastrostomy or PEG tube for all her nutrition, hydration and medication. In order to maintain her chest health Jean had to be careful of her positioning and move regularly to prevent aspiration and a build up of mucus. For Jean, behaviour was no longer a challenge. She was described as fairly laid back, easy going and enjoyed watching what was going on around her. Even though she could not eat, she enjoyed joining in at mealtimes and watching staff preparing meals. The most significant effects for her at this time were severe joint contractures, immobility, risk of pressure sores, over production of mucus, and frequent infections. Jean had minimal active movement in her neck and upper limbs. She required full assistance for all movement and personal cares. Jean also developed bowel problems, which together with the practical difficulties in toilet hygiene, resulted in the unusual step of placing a stoma in the vicinity of a PEG tube. Her general condition continued to decline with the progression of the syndrome. In Jeans case, Explore provided a range of services that included general training, skills coaching, advice, assessment for and provision of equipment. The people involved and the interventions provided fluctuated as Jean’s needs changed. Where appropriate we worked in conjunction with other services e.g. the local DHB OT and Enable NZ outreach service. .
HEALTHCARE NEW ZEALAND In March 2009 I received a referral for Jean following a number of chest infections and hospital admissions. The referral request was to assist with night time positioning for comfort and to promote good lung health. However, Jean then sustained a spontaneous right neck of femur fracture so she was in bed for 24hrs a day while the fracture healed. 8 months after the R#NOF, there was a second fracture to her left leg. This was manipulated under anesthetic and a full length cast fitted for 16 weeks and leg brace for a further 4 weeks. This led to an extension to the period of bed rest. It was also decided that she was not to be hoist transferred until a review of her moving and handling had been completed. The fractures contributed further to the ongoing changes in the stiffness, mobility and movement of Jean’s joints. The combination of these factors meant that the wheelchair no longer suited Jeans shape. This meant that even when Jean was not required to be on bed rest she could not access the rest of her home and so was effectively confined to her bed. The other consequence of this was the limitation to social interaction available to her as she could not join her flatmates in the living areas.
HEALTHCARE NEW ZEALAND I worked with Explore colleagues and Jean’s residential services support team to establish Jean’s priorites and set objectives for my intervention. Jean enjoyed “people watching” and social interaction and the opportunities for these became quite limited, particularly after the second fracture. Jean’s wheelchair was no longer comfortable for her and her bed could not be brought through to the communal areas. The shower trolley could not be brought through the doorways either, so the shower became inaccessible too.
HEALTHCARE NEW ZEALAND Taking Jean’s priorities and her general health into consideration I identified these objectives for my intervention. Addressing Jean’s position and movement in bed was key to meeting these There was also a need to minimise moving and handling risks both for Jean and the support staff These objectives were initiated before the first fracture and added to over the period of my involvement. The order in which we addressed the different issues was influenced by the safety risk, Jean’s priorities, medical interventions and external process e.g. equipment provision, other agencies.
HEALTHCARE NEW ZEALAND I chose an MMS Active air and foam mattress to combine the pressure relief of an air mattress and the comfort and moving and handling properties of foam. I considered and alternating air mattress but moving and handling tasks are often more difficult on the moving surface and Jean still needed regular turns to prevent mucus consolidation in her lungs. These regular turns were made easier by using a Mobicare tube glide sheet that could remain in place under the sheet allowing Jean to be turned slightly with little interruption to her sleep and with little effort by support staff. Jean also had 2 large slidesheets that were used to move her up and down in bed. With assistance from the 24hr positioning clinic Jean was provided with small positioning cushions for axillas, neck and knees. These were chosen as they could be repositioned easily as Jean was moved. Staff received coaching in use of appropriate techniques with the new equipment. In addition all staff attended formal M+H training based on unit standard 5012 to ensure they were all at a similar level and using best practice techniques.
HEALTHCARE NEW ZEALAND Over the course of 2009-10 Explore collaborated with the complex seating and 24hr positioning teams from MidCentral DHB and EnableNZ to identify alternative seating and appropriate positioning cushions. The final decision was that the primary aims of a wheelchair/seating system for Jean were to access the living areas of her home and be able to spend some time out of bed in comfort. A secondary aim was to be able to travel in the wheelchair in a van. A Regency chair was selected, this provided some pressure relief and accommodated Jean’s unique shape. The back rest could be reclined and the thought was that this would make lateral transfers possible because by this time Jean was no longer being hoisted . No extra postural supports were added because of the changing nature of Jean’s shape and because posture correction was not a current concern. I requested support from an OT colleague due to the complexity of Jeans transfer needs. The second OT would also be well placed to take over when I went on parental leave, allowing some continuity of service. Eleanor joined me and she will continue the presentation
HEALTHCARE NEW ZEALAND For Jean, the key to increased socialisation was being able to get out of her bedroom. Due to the design of the house it was not possible to take her bed out of the bedroom This gives an outline of the design of Jeans home to show the relationship of the rooms. Jeans bedroom was near the living room and the bathroom at the far end of the corridor. The doorways were wider than standard and their position was critical to being able to move equipment around the house.
HEALTHCARE NEW ZEALAND . Our next consideration was how to support Jean during the bed to wheelchair transfer as we had been advised that she was not to be hoisted at this time . Initially we tried a lateral transfer using a Pat slide and 3 members of staff to move her slowly and gently. however this did not conform to the shape of Jean or the chair, thus causing her some discomfort during the transfer. Staff also had an extended reach across the chair at an uncomfortable height because the chair provided could not be reclined to a flat surface, nor was it height adjustable. Jean expressed discomfort during this process so we tried lateral transfers with sliding sheets instead.
HEALTHCARE NEW ZEALAND 3 staff transfering Jean using full length slide sheets and with the head of the bed elevated to match the angle of the chair. This was more comfortable for Jean but not for the staff because they had an extended reach. Multiple transfers were required to transfer from bed to chair, chair to shower trolley and back again.. . There were only 2 occasions during a typical day when 3 staff were on shift together so this impacted on the times when she could be transferred. Therefore this transfer technique was not considered suitable for daily use but could be used on occasion when special arrangements could be made, for example when going to hospital appointments until an alternative was in place. Lateral transfers may have been safer for Jean with respect to her bones but this came at a cost of continued isolation for her, compromised personal hygiene, increased handling risks for staff and knock on effects for flat mates as the staff were all busy in one room, and so unable to attend to their needs.
HEALTHCARE NEW ZEALAND Following the second fracture a decision was made that hoist transfers should be discontinued. Once the second fracture had healed we consulted with the Orthopaedic Surgeon to gain his consent to trial alternative hoisting techniques and equipment. To reduce unnecessary pain and discomfort and avoid risk of further injuries we used each other as models to try out different styles of hoist and slings with consideration of alternative spreader bars, and mobile hoist vs. ceiling/gantry style. We reasoned that the most comfortable position to lift Jean in would be as similar to her usual posture as possible, without increasing flexion and abduction at hips and not increasing pressure through fracture sites. We were also looking to limit the number of hoist transfers and distance travelled in the sling . We needed to consider how the sling was going to be placed and removed. In a discussion with her support team about the various choices a gantry hoist and small hammock sling were chosen as the preferred option.
HEALTHCARE NEW ZEALAND A standard small sling was tried first, with the leg sections passed under both legs rather than between her thighs. We tried with the hanger bar across her body in the usual manner of use and found that this lifted her into a more seated position, with the concern that this would put additional pressure on the fracture sites and hips . With the hanger bar lengthways as in this photo a more horizontal position was achieved but brought the sling closer to the face and the feeling of claustrophobia noted by me. The length of the attachment loops still did not give us enough options in terms of achieving the best position for Jean Then we tried a small hamock sling and this appeared more appropirate and was left in place for a week. A maximum of 2hrs in the chair was set because of the length of time since Jean had been out of bed and because the sling needed to be left in place. It was too difficult to remove and be repositioned to return her to bed. Even after this short time some marks were noted on Jeans skin. This was reviewed with Jean and her support workers. The shape and fit of the small hammock sling was good but it needed to be modified to reduce pressure risks
HEALTHCARE NEW ZEALAND We had a discussion with the Rep from Rehab Equipment to come up with a design for a custom sling. The solution was a custom hammock style sling with 6 points of attachment to spread pressure, made from parachute silk with no seams or handles so that it could remain under Jean while she was in regency chair. Staff were advised to limit the amount of time in chair, gradually increasing the time as she tolerated it and to monitor her skin condition carefully after using the sling.
HEALTHCARE NEW ZEALAND . We looked at hanger bar options that included a horizontal lifter but this did not allow us to match the shape of Jean, an H style but this was quite large and the same position could be achieved with a smaller X style hanger bar and this was put in place.
HEALTHCARE NEW ZEALAND To reduce discomfort and risk for Jean we needed to minimise the number of transfers and remove the need to transport her in the hoist along the corridor. Preferably using a maximum of 2 Staff per transfer to allow more opportunities during the day when she could be transferred. When the Regency chair, bed and two staff were in the bedroom there was insufficient space for a mobile hoist so an overhead hoist was considered more appropriate. A Gantry hoist was chosen as this would give maximum amount of space for staff and allow wheelchair to be positioned next to the bed. It was very easy to slide Jean from side to side, there was less strain on staff when compared to pushing a mobile hoist on carpet. However it did create a new issue as staff had previously pushed Jean suspended in the sling along the corridor to access the shower trolley. This was not advisable for her safety and would not be possible if a gantry hoist was used. We chose a gantry hoist that had a motor that could be disconnected and moved to another section of track. This was an advantage as we considered using it in the bathroom.
HEALTHCARE NEW ZEALAND Having a shower as opposed to a bed wash was important now that she had a stoma bag in close proximity to her PEG site however there was a need to review the number of transfers required and it was not possible to transfer her laterally from the regency chair to the shower trolley The issue was that Jean was unable to access the shower trolley even with the gantry hoist in her room as the trolley could not get into her bedroom. It did not fit through her doorway due to width and angles and length of trolley The shower trolley could be moved into the bedroom directly opposite the bathroom. We considered re-locating Jean to this room but this was not an ideal choice as there would be less opportunity for incidental social contact and could upset other residents who may not have understood the need for changes. Jeans need for frequent attention during the night and keeping noise to a minimum for other housemates was another consideration Changes to structure of house such as widening the doorway or adding a new doorway directly to the lounge would be option of last resort due to time and funding constraints An Extra section of overhead hoist track in the bathroom was considered as a viable option. The down side was that staff were required to move the hoist motor and there would be an extra transfer for Jean – bed to chair and chair to shower trolley.
HEALTHCARE NEW ZEALAND Jean was the only person that used the shower trolley so we reasoned that a shorter trolley would suit her and be able to move within the space available. I visited EnableNZ stores in Palmerston North to measure up available equipment and found the ideal trolley.
HEALTHCARE NEW ZEALAND At the end of this process we were able to discharge Jean from our service knowing that she was now able to get out of the bedroom, having regular showers and was able to sit comfortably in her chair.
HEALTHCARE NEW ZEALAND We were also confident that we had met the other objectives that had been identified. Staff had attended training and now that more appropriate techniques and equipment were in place there was a consistent approach from all staff. Jean was able to participate in some social events and able to go out into the community with her support workers. Although she had complex and changing needs with the support of a dedicated team she was able to enjoy the rest of her life in her home, close to her family. We hope you have enjoyed this case study and we welcome questions from the floor
Moving beyond the bed – One woman’s journey out of her bed following femur fracture
Moving beyond the bed –One woman’s journey outof her bed following femurfractureMargaret Goodall, Eleanor Barrett
2 This presentation is dedicated to the memory of one lady who exceeded all expectations
3 San Fillipo Syndrome• Mucopolysaccharidoses III• Genetic, autosomal recessive• Lack of enzyme to break down glycosaminoglocan heparin sulphate.• Build up of sugars in brain and other organs.• Management of symptoms
4 Effects of San Fillipo Syndrome for Jean• Normal development to age 2- 6• Learning delay and regression• Speech delay and regression, decreased swallow• Stiff joints• Over production of mucus – respiratory infections• Urinary tract infections• Congestive Heart Failure,• Enlarged liver and spleen• Sleep disturbance• Behavioural challenges
5 Why was Jean in bed?• Series of chest infections and hospital admissions• Spontaneous fracture of Right Neck of Femur• Changing body shape and contractures• Spontaneous fracture of Left Shaft of femur
6 Jean’s Priorities • 1 – to have some social interaction • 2 – to have a shower • 3 – to be comfortable and pain free particularly in bed.
7 Our objectives• Maintain lung health.• Maintain skin integrity.• Maintain available joint range of movement.• Safe working practice for staff• Comfortable seating and mobility• Maintain personal hygiene
9 Seating comfort and mobility In conjunction with Wheelchair outreach clinic• Comfort over postural support• Flat as possible for transfers• Able to be transported in van• Issued with Regency Care Chair
10 House design Level Family Bath access room room shower Jeans roomKitchen/living area Patio and garden area
11 Bed to wheelchair transfers• Pat slide with 3 staff• Chair did not go completely flat• Not comfortable for Jean• Staff levels• Staff safety• Technique to be used occasionally
12 Lateral transfer difficulties The Regency Over reaching for chair reclined to lateral transfers. the full extent
13 Sling Options• Orthopaedic Consultant consent• Sling options – remain in semi-reclined position, maintain hip position – flexion and abduction and external rotation at hips• Ease of positioning and removal
16 Hanger barsH- style hanger bar X- style hanger bar
17 Choice of hoist • Minimise number of transfers • Staff numbers needed to transfer • Space to move • Mobile vs Gantry • Access to shower
18 Shower options• Swap bedrooms• Widen current doorway to bedroom• Add new doorway from bedroom to lounge• Extra gantry track in bathroom• Different shower trolley
19 Jean’s shower trolley Short shower trolley fits through doorway into bedroom for transfers
20 Meeting Jean’s priorities Jean was • Able to get out of the bedroom and join in with others in the lounge, • Having regular showers • As comfortable as possible in her bed and wheelchair
21 Achieving our objectives• Maintained Jeans lung health.• Maintain her skin integrity.• Staff working safely• Maintained available joint range of movement.• Comfortable seating and mobility.• Access to social interactions• Improved her personal hygiene