ILS Case Manager Odile shares the story of her client Ellen, and the impact of COVID-19 lockdown

Meet Ellen

It is a joy to work with Ellen. She is a kind thoughtful woman, who has a fun sense of humour, loves to laugh and be sociable with family and support workers.

Ellen lives with a learning difficulty, has minimal verbal communication and uses a tilt in space wheelchair. Ellen can use behavioural outbursts to express herself if she feels her needs, wants or wishes are not being met.

She lives in supported community living, and currently there is only Ellen and one other resident in the home. She has privately purchased her manual and powered wheelchair and has a wheelchair accessible vehicle.

Ellen’s family are very supportive, and Ellen has daily contact with them via Skype. While she would love to see more of her mother, she lives around an hour’s journey away but does not drive, so tends to visit when Ellen’s ILS support worker, managed by me as her Case Manager, is on shift and can drive Ellen’s car.

The local authority provides her package of care, which includes daily one-to-one care and overnight sleep-in care via a care agency. Ellen’s Deputy finances a top-up to this service to provide 24-hour care.

In addition, Ellen has a support worker she directly employs via ILS to work two 7.5 hour shifts a week. This role delivers quality of life enhancement for Ellen through the enjoyment of activities the main care provider finds difficult to offer. It is, if you like, the ‘cherry on the cake’ care, enabling Ellen to participate in activities that many of us might take for granted such as outings to places of interest and seeing family.

The damaging impact of lockdown

During the pandemic and lockdowns, Ellen became very isolated.

The care agency became very controlling and there was minimal communication from them to either the family or me. The agency were the only people allowed to see her during that period.

Ellen’s behaviour deteriorated and she refused personal care and lost weight. The care agency did not highlight this to social care or me, and it was not until the agency finally allowed the ILS support worker to visit that these issues became known.

Safeguarding became involved and the care agency agreed to work more openly with the external support.

Over time, the care agency reluctantly allowed the reintroduction of the ILS support worker, who now takes Ellen out and assists the care agency to positively support Ellen in everyday living using behavioural tools.

Ellen’s tone had increased, and she complains of pain in her shoulder.

ILS Case Management intervention on Ellen’s behalf

The care agency did not want physiotherapy going into the home. I worked extremely hard to impress upon the agency that Ellen needs to receive physiotherapy to manage her tone, and liaison with social services occurred to help support the agency to allow therapy to resume.

The physiotherapy massage has now been reintroduced weekly. This is enabling Ellen to reduce her tone and for the therapist to share techniques with the care agency to help reduce tone every day.

I referred to speech and language therapy to review her diet and monitor her weight. The therapist has now visited and advised on diet and set up bi-weekly weighs to monitor Ellen’s weight.

I am working with the care agency to support Ellen in using her powered wheelchair, so that she can go for longer walks with her ILS support worker and family.

It is taking time for Ellen to build up her outings again with her ILS support worker and, although this process is in the early stages, it is going well.

With the additional support now in place, Ellen is starting to respond well to socialising and trying new activities as well as revisiting old activities she used to enjoy.

Ellen’s family would like her to be placed closer to her mum and to be provided with more consistent and higher-level care as the family do not feel this is currently provided by the local authority.

Her ILS support worker has taken on some of the main carer roles such as taking Ellen for her optician visit, as the main provider has not been able to manage this. When viewing alternative accommodation that is identified to assess its suitability, additional support will also be required to ensure the right placement is found for Ellen.

The ILS support worker is also looking into groups locally that Ellen may be able to safely attend, to enable her to have more social interaction with people other than her support workers and family.

Ellen has access to her iPad that allows her to communicate virtually with her mum and other family members and Ellen’s ILS support worker sets up FaceTime with Ellen’s grandmother.

She has expressed an interest in going swimming and has revisited the local hydrotherapy pool with myself and her ILS support worker.

The benefit of the right support

There are many aspects of Ellen’s life that needed and continue to need case management attention.

Working with a care agency that does not engage with external support has proven difficult. As the pandemic and lockdown came into force the loss of weekly activities and contact impacted heavily on Ellen.

The care agency did not allow Ellen to have any visitors or go out at all due to the pandemic. It took a lot of time and patience to be able to get external support services back into the home.

A fast turnover of agency staff led to a lack of training, and this led to some negative responses to Ellen’s support needs such as telling family Ellen is having a ‘No to anything day today’ and ‘down time from 9pm means no contact with family’. This upset Ellen’s family.

Working closely with the family to support them in communicating with the care agency has been particularly important and prompting the care agency to contact the family regularly is ongoing. I have found working closely with the Deputy team especially useful and extremely supportive, and this will naturally continue.

In addition, having the ILS support worker who is open to learning, and who I have been able to train and support with communication and behaviour techniques, has been a vital lifeline for Ellen. It also means that I can make sure she is monitored, and if any issues arise, I can flag them with the local authority.

Now lockdown is behind us and as we move forward, it will be vital that the care agency have continued external support and that I and Ellen’s ILS support worker maintain a positive working relationship with them. This will ensure that we can provide them with the support and training required to maintain the focus on Ellen’s best interests and quality of life.

Author: ILS Case Manager, Odile Waddington-Jones

This article was also published on www.nrtimes.co.uk on 31st March 2022