19 May 2020

CNWL’s Specialist Inpatient Learning Disabilities Unit has modified approaches to support young people in their care, during the COVID-19 pandemic. Here is the unit’s account of what they’ve been doing.

People with learning disabilities and Autism Spectrum condition may not fully understand what the COVID19 crisis is. The teams have pulled together personalised plans for each individual, focusing on what crisis means for the world but most importantly what it means for them and others related to them. In doing so, we have heavily relied upon social stories, picture boards and so on.

With abundant support from the Trust’s IT Department at an exceptional speed, we were able to provide video-enabled devices for each unit.

All patients can now use video calling, to link in with families and carers in community. There are predictable times when they receive calls from families, and it is reflected in their personalised time tables. Patients are provided with choice if they wish for their families and carers to join them while they are engaged in an activity.

Here are some individual inpatient examples:

  • A young person with a learning disability, childhood Autism, Attention Deficit Disorder and extreme disturbance of behaviour was admitted on 7 April 2020 – during peak of COVID19 crisis. His family lives over 60 miles away and are unable to visit him. The family have been able to connect with him over video calls, and just last week, they chatted as he engaged in a therapeutic pizza making session with an occupational therapist.
  • A young person (17 years old) who is currently detained under our care and nearly 300 miles away from home, has a severe learning disability, childhood Autism and extremely limited verbal skills. Since early childhood, he is accustomed to his mother accompanying him to hairdressers. With family unable to visit him, there were significant difficulties in engaging with him for purposes of personal grooming. Just this Friday, our Health Care Assistant (HCA) offered him a personal grooming service while his mother joined by video call. He looks exceptionally handsome and HCA services are now in high demand!
  • One young person from the local area from the BAME community exhibits behavioural difficulties owing to a severe learning disability and autism spectrum conditions. He is a huge fan of his mother’s cooking and her ethnic specialities. With restrictions on visiting and community access, he was missing the comfort and connection. With very careful consideration, we arranged for family to video call while his mother was preparing food, they then brought all his favourite dishes to the unit, and had a linked video call where the whole family enjoyed conversation and dinner together.
  • Over the Easter weekend, all patients were encouraged to participate in Easter egg hunting. While they did, they had an individual and collective photoshoot. Thanks to  glorious sunshine, the photos came out a treat. All families have been sent copies and we intend to share the album with them upon their discharge.
  • Take away food deliveries are a big treat for some of our patients. While this has been limited, we have replaced them with occupational therapist led cooking sessions. Pizzas and coconut cake were a big hit.
  • The COVID-19 redeployment scheme for staff members was very gratefully received by inpatient services. We have already seen brilliant output and influence from weekend Art Psychotherapists and a Dance Therapist. We are now considering how best to incorporate such skilled staff into our treatment programmes.
  • One 16 year old patient has unfortunately presented with significant disturbance owing to COVID19 crisis; especially as she was being prepared for discharge to home. We have encouraged exchange of short audio and video messages between her, family, friends and community specialist school teachers. A consistent message from focusing on discharge planning has provided much needed hope.
  • Patients who were undergoing transition for purposes of reintegration and discharge to community have experienced set back and delay. Within weeks we were able to engage with community providers, and offer them assurance through modified care planning. One service user is being discharged to the community next week; his COVID19 tests came back negative on Friday. The Family and Community Team are very grateful for the proactive approach; in absence of which her discharge would have been delayed with a risk of losing specialist community placement.

Looking after patients in the community

Vulnerable people with learning disabilities and other associated disorders who reside in the community rely extensively upon support from others. The COVID19 crisis has significantly affected their health and wellbeing. Our Community Learning Disabilities Teams are working in partnership with Social Care colleagues to make sure that personalised and adequate support is offered to them and their families.

  • Dedicated staff members have been engaging in telephone conversations periodically to look after their welfare. Where possible and supported, video calls are being used too.
  • For people having possible symptoms and health concerns, our staff have been trained to go through a symptoms checklist and liaise with appropriate services where necessary.
  • During a pre-arranged call, our Community Learning Disability Nurse discovered one vulnerable young man who had limited access to funds, just before Easter owing to a delay in him applying for Universal Credit. Lot of kindness and some telephone calls later, everyone was very relieved to know he had essential items and food.
  • Our community teams have extended support to communal placements e.g. residential home and supported living projects. This usually takes the form of collective discussion and problem solving on issues such as access to community and in one case, bereavement support to all residents.
  • For our service users who tragically passed away due to other health conditions or COVID19, our community teams have reached out to families, carers and each other, offering bespoke support. For one service user aged 42 years who passed away in her sleep (non-COVID, possibly Epilepsy related), the community team joined her funeral by remote link. Written statements were sent to her family and it touched us all how the family started the obituary by paying tribute to health and social care services. The family has been sent personalised condolence notes with an invitation to join us in planting a tree in her memory, once social gatherings resume.
  • Being looked after by staff members in Personal Protective Equipment (PPE) can be a frightening experience for our service users who rely heavily on non-verbal techniques to communicate. We have encouraged all staff members to write their names or stick their photos on aprons where necessary.
  • A vulnerable young man residing in his parental home unfortunately lost both parents within weeks; leaving no one in the house to look after him. His sister relied upon goodwill extended by neighbours while mother was in hospital. The Community LD team in partnership with social care services supported him through the crisis. Very careful consideration, a proactive and flexible approach allowed his sister to take him under her care. We intend to engage them in bereavement and loss therapeutic interventions when they are ready.

Finally – community residents or inpatients, people with learning disabilities, Autism Spectrum Condition or associated disorders find it exceptionally difficult to understand and apply social distancing or isolation requirements. Where possible, we have encouraged the use of accessible information to educate them. Where it has been less than successful, we have encouraged use of social distancing and isolation principles to ensure their safety and the safety of others. It is by no means an easy or straight forward task. Our approach to enable others, focus on abilities as opposed to disabilities, and flexible solution-focused thinking has made it possible so far. Our commitment and trust our senior leadership team places in us enables us to carry on, no matter how big a challenge is.