As we all continue to adjust to the current situation I would like to take this opportunity to give you an update on what we are doing at the Donna Louise over the next few weeks in order to try to support you and your families in the best way we can.
We are planning a phased reinstatement of services between now and the autumn. Phase one of this plan starts on Monday 1st June with the return of the following services:
Counselling and Emotional Support – Jane Porter and Maria will be returning to work. They will be contacting families over the next few weeks to explore how best they can help and support you. They will be using telephone and virtual systems for providing counselling to abide by the governments social distancing rules and minimising contact with people. The service will be limited initially as Maria and Jane work out how best to provide the service.
Play and Activities service - Nikki will be looking at developing a virtual play and activities summer programme; looking to provide some 1:1 virtual play session for children; looking into how we could support siblings both virtually and possibly at the hospice and looking to develop a whole new range of resources that we can share with you to support you in caring for your family at home.
Care Co-ordination service - Liz, Tracey, and Jo will return to work with Debbie. Their main priority will be to re-engage with all the families, speak with you all about what your current needs are and how best we can help to meet these needs and support you as we move forward.
You can contact your care co-ordinator by email or telephone. Their contact details are below
Parent and Carers Support Stacey Bourne will be working with all the above team to identify ways of supporting parents and carers, particularly an opportunity to set up a virtual Parents and Carers support group. Stacey will also be working closely with Nikki on the play and activities programme.
Medical Support. Dr Sarah Thompson and Dr Laura Roe are available to provide medical reviews, advice, and symptom management. We have recently needed to reduce this service, so unfortunately, they have very limited sessions available and work on a rota, so please bear with us if you need their input. We continue to work towards introducing video consultation for symptom management. The IT equipment arrived this week and we will be trialling with a few families. This will be a new development for us, with Dr Sarah and Dr Laura using this to help manage children’s symptoms remotely, minimising the risk to both children, families, and staff. We hope that this will be available in the next few weeks.
Facebook fun. A closed Facebook group has been set up for families as a way of sharing fun activities to keep everyone entertained and to help us stay connected while we cannot be together. It’s proving really popular with the families who have already joined, so if you are not already a member, follow this link and click ‘Join.’ It’s a closed group so nothing shared within the group is visible to anyone outside the group - https://www.facebook.com/groups/528435077872865/.
Help us to help you!
For us to be able to help you in the best way we can we really need to understand how your life has been affected by Coronavirus and what we need to do differently to help and support you over the coming few months.
We would really like to hear from you if you have any ideas or suggestions about what we could do for you. Please feel free to discuss any concerns, ideas, or suggestions with your care coordinator.
We know how difficult it will be to start to leave your safe homes and start to use services, like The Donna Louise, again. We would really love you to tell us what would help to reassure you and reduce any anxieties you may have? What things will you need us to have in place to reassure you that your child will be safe being cared for by the Donna Louise team.
We will soon be sending out a link to a short survey that we would really appreciate you taking a few moments to complete. The answers we receive will help us to plan our service for the next 6- 12 months as we try to adjust to the new normal and support you in the best ways we can.
Other links and information.
Financial support for children with complex health care needs.
The government has released £37 million pound to help support families with a child with complex health care needs. £10 million of this is specifically to help families with the additional pressures caused by coronavirus. Please see link above or www.familyfund.org.uk for further information. Families can make an application for this funding after 9 months after the last application - not the previous 1 year.
SHARE study. I am sharing the link to a survey that’s been developed jointly by University of Southampton and University of York to capture the impact of COVID-19 on families caring for a life-limited child. We would like as many responses as possible over the next 2-3 weeks as we will be using the initial results to develop messages for Children’s Hospice Week. We are also asking any families who might be interested in being interviewed for Children’s Hospice Week to contact us. The link to the study is https://www.isurvey.soton.ac.uk/37377