Faye is a 12 year old girl who lives at home with her parents. She had an 8 month history of rapid weight loss and was struggling to eat and drink which resulted in several admissions over a 2 month period to a paediatric ward at her local hospital.
It was decided to utilise a naso-gastric tube to enable feeding and to work with the community team to enable home based interventions around eating. She stopped going to school and over time lost contact with her peers and became increasingly isolated and low in mood.
Her ongoing refusal of any intake meant she had to remain in a paediatric ward until an inpatient bed could be sought. There were no beds in her locality that could deliver a 7 day provision, so she was admitted to the Alder Hey Mental Health unit – 300 miles away from her home and away from her family. At the point of admission to the unit, the diagnosis was of an early onset eating disorder – anorexia nervosa with some questions around possible neuro cognitive difficulties. The Alder Hey Mental Health Unit is currently a half hour drive from the main hospital.
During Faye’s care she was diagnosed with the eating disorder Anorexia and Autistic Spectrum Condition (ASD).
Care in the first few months at the unit included intensive management of her physical and medical needs including:
Bed rest plus wheelchair use to mobilise Faye, due to her low body weight and physical issues which included low blood pressure, poor temperature regulation and skin integrity issues. Management of this was supported by the Consultant Paediatrician from the main hospital.
Feeding plan – via a naso-gastric tube. Management of this was supported by the dietitian from the main hospital.
Constant one to one supportive observations – with staff having to ensure limited mobility; monitoring intake and preventing disposal of that intake through vomiting for example.
Low stimulus activity to help maintain weight; maintaining Faye’s physical safety but enabling some stimulation and occupation.
Formal education and therapies could not be undertaken at this point due to the medical compromisation and impact on her cognitive functioning.
Access to her peer group was limited until she reached a point to be able to come out of her room and access the main communal areas.
Proactive work with staff to stimulate through the use of TV; music; arts and crafts and story reading – all implemented during bed rest to limit Faye’s movements and to avoid burning up the energy intake and impacting on weight gain.
Visits from her parents were limited in the first two months due to the distance and the fact that the unit does not have its own parent accommodation. As a result, the parents took the decision to temporarily relocate to be near enough to visit more regularly and to access meetings and therapies. This is not something many families can easily do.
This was an incredibly difficult time for Faye as her bedroom environment didn’t provide a pleasant view of the outside world and the TVs only allowed for watching DVDs. She missed her favourite programmes. Having a view of gardens and interactive electronic equipment that would have allowed her to see her friends and family on a screen would have helped her mood and enabled ongoing social interactions in those first few months.
After the first 3 months Fay’s weight increased and her vital signs began to stabilise. She begin formal therapies and other assessments to help staff gain an understanding of her functioning. It was during this time that she was diagnosed with ASD. Further work with her gave insights into her feelings around eating and how to manage this with her. Her weight gain progressed as she began to increase her intake. She was also able to mobilise out of her room into the unit building and for short spells into the unit garden. This this was an enormous improvement on being stuck in her bedroom, though it was hard accessing some of the garden spaces in a wheelchair.
Faye could only look around the garden as it was not set up with activities she could engage with or planted at a height that would allow her to touch, feel and smell the plants and flowers.
Prior to becoming unwell, Faye loved to garden with her grandfather – they would grow vegetables from seed in the greenhouse and then plant out in the vegetable patch – these would be picked and used in the family kitchen. As access to the unit’s garden was restricted for Faye staff brought items for her to plant in pots on a table and her peer group later transferred these to the garden for her. She even gave some to her grandfather to take home and plant, with a plan to eventually going to visit him to see how they had grown.
Growing things gave Faye a sense of connection to her family as well as helping her rebuild her skills and stamina when concentrating on an activity, as her weight and cognitive skills were restored. In addition, once the vegetables had grown and she was more accepting of food, she allowed the team to incorporate the produce into her meal plan.
The staff would take Faye into the garden in her wheelchair to collect leaves and flowers – she was able to get some fresh air and was encouraged to reach over to items and bend gently down, which helped with her low level exercise needs as well as to engage her interest and give her a sense of gradually being able to do more. As she became more physically healthy and mobile the exercise extended to walks in the garden areas and then in the local community to collect items to bring back and paint. She was also more actively able to join the group gardening activities, creating wall mosaics and scare crows for the vegetable patch. These activities helped build her physical strength and flexibility as well as develop her creative side and giving her a sense of enjoyment.
Prior to her illness Faye had enjoyed horse riding and looking after a horse at a local stable near to her home. The only access to seeing her horse was through her ipad when her family would stream videos to her. The ipad enabled her to maintain contact and to see that the horse she looked after was well. It also gave her an incentive to get well and get back to the stable. As she became more able to go out the staff organised visits to a local stable where she could watch the horses and gradually do low level grooming. Eventually Faye was able to get back on a horse which helped her developed muscle tone and balance skills during a little riding.
Faye was able to begin gradual home leave starting with a few hours first, then overnight and then full weekend stays. Eventually she could move back to her home location and is now managed and monitored with the support of community services. She continues to do well.
When families live many miles away from the unit, home leave proves very difficult – a lot of families cannot afford the cost of the transportation and do not always meet the criteria for NHS or social care funding. This can impact on delayed discharge and the child and parents not having confidence in their own ability to manage. The new unit is being built right next door to Alder Hey Children’s Hospital and will offer essential parent accommodation when needed. When parents are nearby the team are able to work more collaboratively and can help improve parents’ skills in managing feeding and physical needs. The new unit will also have garden spaces that allow greater wheel chair access; planting at different heights; sensory plants and garden activity equipment (for low level activity as well as full robust activities) that offers an essential step in recovery for children who cannot yet go off site.
7 in 10 children and young people who experience a mental health condition have not had appropriate interventions at a sufficiently early age. Alder Hey Children’s Charity’s ‘7 in 10 Children’s Mental Health Appeal’ is aiming to raise vital funds to enhance inpatient and Community mental health services at Alder Hey Children’s NHS Foundation Trust, enabling more children to access the treatment they need at the time they need it.
A new ‘Clinical Hub’ is being built which will include mental health outpatient facilities and a brand new twelve bed specialist inpatient mental health Unit, alongside other cross dependent community health services.
Located right next door to its state-of-the art specialist hospital and within a modern, child-friendly building, the enhanced provision of mental health services will increase current available inpatient bed capacity and enable more children and young people to be seen and treated quickly by experienced, specialist clinicians.
Patients and their families will be able to receive rapid and early access to co-ordinated multi-disciplinary care, benefitting from the most up to date assessment and diagnosis facilities. The Hub will also enable Alder Hey’s community services to link more closely with its specialist hospital services, enhancing care for children with long term conditions such as neurology, cardiology and infectious diseases.
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Names and details have been change to protect our young patients. The image above is a model.