Dear all,

Whilst it feels late to be wishing you all a Happy New Year, I hope that you are all keeping well, and are slowly adjusting to a ‘New Normal’ as changes to COVID-19 restrictions continue to evolve. I wanted to take the opportunity to contact you with updates on the service provided by the Jessie May Care Team, having last contacted you late in 2021 with the updated revised service offer.

The core aim of the service provided by Jessie May remains the same; that being to support those children living with the additional challenge of a life-shortening conditions, and their families both at home and in hospital. However, we have started to  develop the service, and in recent weeks you may have met more members of the Care Team members as we look to ensure the resilience of the service across all of the areas we serve, alongside continuing to increase the knowledge of the care team regarding the individual needs of your children and families.

Ken Hull - Nursing Care Lead

Within the recently shared Service Offer, we made reference to discharging or pausing the service provision for some children. We are contacting all families now to discuss this collectively, ahead of writing to you all individually. The term ‘Paused’ has possibly generated some confusion and following discussion would move to using ‘Open Access’ instead of ‘Paused’. By this we mean you  would be able to initiate contact with Jessie May should your needs or circumstances change and will continue to be contacted with wider communications from the charity. The Care Team however, won’t actively call you for updates or provide care directly at home. This term we hope is one that you are more familiar with in healthcare, in that a number of you will have open access to the specialist teams that support you.

Claire Matson continues to lead on seeking regular input from you, and will continue to do so in the coming months with the aim to enable Jessie May to respond to feedback and reflect any changes or suggestions from this in the service provided. We  hope that the ‘digital’ format of surveys is straightforward and easy to use, and not too time consuming – should you require this in a different format please do contact us.

We would like to take this time to highlight our Annual Service Evaluation Survey, which we would be really grateful if you could spend a few minutes filling out. At Jessie May we strive to make sure all of our families are happy with the care they receive and feel supported by our nurses. By sending out an annual survey we are able to monitor this and openly invite you to share any concerns or suggestions.

You can find and complete the survey using the following link:

Thank you in advance for taking the time to complete this short survey, it will really help us provide the best possible service to Jessie May children and families.

We have also recently discussed the potential of sharing key documents with you in a digital format and will be seeking  your input on this before any changes are made. The idea behind this would be to enable you to read and digest the care agreement, for example, ahead of the Care Team visiting you to update. We are also exploring the prospect of a streamline annual review of the care agreement with key updates being made to  reflect any changes in your individual circumstances.

Finally, as highlighted in the revised service offer, we plan to hold a number of group family events, the first of these is currently being planned to hold in April during the Easter holiday, provided by Gympanzees.

The Jessie May session will be held on Thursday 14th April between 1:30-3:30pm, at the Gympanzees Pop-Up event. Invites have been sent to families earlier this week, with full details on how to book your spot.

I would like to wish you well as we move forward into 2022, and please don’t hesitate to get in touch if you have  feedback  on any of the information contained in this service update or any other aspect of the service provided.

We aim to send out updates such as this on a quarterly basis, however please do contact us if you have any service queries ahead of receiving an update either by email to or by phone on 0117 9582172.

Ken Hull – Nursing Care Lead, on behalf of the Jessie May Care Team.