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Online activities schedule

Our weekly schedule of online activities and virtual events is communicated via email and is open to all Demelza families. If you're not receiving these, but would like to, let us know!
Families Facebook group logo

Families Facebook group

Our private Demelza Families Facebook group, run by families and Demelza staff, communicates upcoming events, support groups and news from Demelza, as well as being a space to share experiences and seek advice.
Demelza heart logo

Bereaved families Facebook group

We also have a Demelza Facebook group for bereaved families to seek advice and share experiences with others going through something similar.

Updates

As of 17 June 2021, we began to contact families about your requested dates for short breaks between 1 July and 30 September.

Please be patient whilst we contact families about this as this will take us some time.

If you have not heard from us by Monday 5 July 2021, please contact us on careadministration@demelza.org.uk

Art Therapist Rachel painting

Meet our Family Support Team

The friendly faces of our Family Support Team are here to provide you with specialist support for you and your family.

These are just four of our wonderful Family Support Team, and over the coming months we'll be adding new faces so you can 'meet' the entire team.

Jane, Deputy Director of Family Support

Deputy Director of Family Support

Jane O'Neill

Family Liaison Lead, Anna

Family Liaison Lead

Anna Sillett

Jo, Therapeutic and Bereavement Lead

Therapeutic and Bereavement Lead

Jo Burton

Emma, Family Events Lead

Family Events Lead

Emma Sweetlove

Meet our Family Support Team

The friendly faces of our Family Support Team are here to provide you with specialist support for you and your family.

These are just four of our wonderful Family Support Team, and over the coming months we'll be adding new faces so you can 'meet' the entire team.

Jane, Deputy Director of Family Support
Deputy Director of Family Support

Jane O'Neill

Family Liaison Lead, Anna
Family Liaison Lead

Anna Sillett

Jo, Therapeutic and Bereavement Lead
Therapeutic and Bereavement Lead

Jo Burton

Emma, Family Events Lead
Family Events Lead

Emma Sweetlove

Helpful resources

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COVID-19 letter to parents and carers

Demelza's letter to you, addressing the COVID-19 pandemic. Download
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COVID-19 letter to parents and carers

Demelza's letter to you, addressing the COVID-19 pandemic. Download
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Warning for visitors poster

We’ve created a poster to help warn potential visitors/delivery drivers to take extra care around your home. Download
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Warning for visitors poster

We’ve created a poster to help warn potential visitors/delivery drivers to take extra care around your home. Download
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Colour in Dotty!

A Dotty colouring in sheet for everyone to enjoy. Download
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Colour in Dotty!

A Dotty colouring in sheet for everyone to enjoy. Download
content.Icon.Name

COVID-19 letter to parents and carers

Demelza's letter to you, addressing the COVID-19 pandemic. Download
content.Icon.Name

COVID-19 letter to parents and carers

Demelza's letter to you, addressing the COVID-19 pandemic. Download
content.Icon.Name

Warning for visitors poster

We’ve created a poster to help warn potential visitors/delivery drivers to take extra care around your home. Download
content.Icon.Name

Warning for visitors poster

We’ve created a poster to help warn potential visitors/delivery drivers to take extra care around your home. Download
content.Icon.Name

Colour in Dotty!

A Dotty colouring in sheet for everyone to enjoy. Download
content.Icon.Name

Colour in Dotty!

A Dotty colouring in sheet for everyone to enjoy. Download

COVID-19 Support and Resources

Short break services include:

  1. Residential overnight short breaks in the hospice.
  2. Day care in the hospice
  3. Care at home


We would like to offer all families the opportunity to request a short break between 1 July and 30 September; either care at home, day care or a residential stay in the hospice for between two and four nights. Please provide a selection of up to three dates that you would like to request, once we have all the requests in we will allocate on a fair and equitable basis.

We have introduced a two night minimum stay, due to the amount of time and preparation it takes the parents/carers and the nursing and care team to prepare for each admission to ensure safe clinical care is provided, it can also be unsettling for some children to stay for just one night.
 
For the foreseeable future, there will no longer be an allocation of 20 sessions or 10 nights per year, as we are aiming to provide breaks to more families who have not accessed care before and be available for urgent referrals as and when required. However, consultation and feedback will form part of a regular review of the service offer.  
 
There are no longer red or green bookings. These previously enabled some bookings to be guaranteed but unfortunately, we are not able to guarantee short break bookings. All short break bookings are subject to cancellation at short notice to ensure we can accept emergency and urgent referrals and in the case of an infection outbreak. Parents/carers need to be able to collect their child within 2-3 hours if their child becomes unwell or if there is an infection outbreak, therefore we are not able to support a stay for families wishing to travel abroad.

If you would like to access short breaks please email careadministration@demelza.org.uk and you will be sent a survey to submit your preferred dates.

We will continue to follow guidance from Public Health England to ensure children, families, staff, volunteers and visitors are protected as much as possible. This includes keeping visitors and resident families to a minimum to aid infection prevention and control, please speak to your local care team to discuss if you would like more information regarding this.

Furthermore, please do contact your local hospice if you feel you are in need of a short notice short break and we will aim to accommodate where we can.
 
We are reviewing the service and will keep you informed of any future developments. Please do feel free to give feedback to careadministration@demelza.org.uk


Can I stay with my child/ young person or visit them during their stay?

Visitors are currently restricted to essential visitors only (direct family members).    

Demelza recognise that each family’s needs will be different, and each admission will be assessed individually and an agreement put in place with the family’s full knowledge.  This should be documented in the child’s care notes and included on each handover. The following principles should be followed;  

 For children staying for;

Step down care:

Parents only are able to stay (siblings will be considered on an individual basis).

Additionally, visitors other than the other parent and siblings are now permitted to visit if deemed necessary by the family for their wellbeing. They must follow these principles: 

-    A MAXIMUM total number of 6 individuals (including the resident child) 
-    A total of 2 households i.e. the resident child and their parent(s) are one household, and the visitors are the second household and must usually reside together 
-    Social distancing of 2 metres between households at all times 
-    This visit will occur for a maximum of 1.5hours 
-    Use of Demelza facilities is to be discouraged. The visit should occur within the gardens or if weather not permitting, in the child's bedroom or meeting room.  If toilet facilities are urgently required, this should be using the toilet in the reception area, and they must be asked to clean all touched surfaces with alcohol wipes after use.  

Respite care: 

Respite care or child’s first stay – no family to stay unless absolutely necessary (1 adult).

End of Life Care:

Parents and siblings are able to stay, a timetable for visitors may be required and times restricted to 1.5 hours. A robust risk assessment will be carried out and measures to minimise risk to other residents.  

Visiting may be suspended if considered necessary (e.g. outbreak).

All visitors must have a COVID-19 lateral flow test on arrival to the hospice and wait for a negative result before entering the hospice building (exception for families coming for end-of-life care) and be instructed on hand hygiene, social distancing and the wearing of face masks when in communal areas.   

Families and visitors with COVID-19 symptoms must not visit Demelza. Exception only for family of child at end of life. 

Advice for each family will be agreed by the Lead Nurse and Team Leader.  


Routine COVID-19 swab testing for children

Regular COVID-19 testing can help to support safer visits, when combined with other infection prevention and control measures. However, due to the challenges testing would cause many of the children and young people who use Demelza services, routine testing will not be expected when it would be unsafe or unkind to do so.

 For children who require Aerosol Generating Procedures (includes; tracheostomy suctioning, Non-Invasive ventilation, Bilevel Positive Airway Pressure and deep suctioning) the Demelza team will discuss with families whether testing may be possible and beneficial. There are other individual circumstances where Demelza may discuss with the child and family the possible benefits of swab testing. No child will be refused Demelza care due to being unable to be tested for COVID-19.

 Demelza has robust infection prevention and control measures in place and has devised a patient pathway that allows us to individually risk assess the safest way to care for children and families. If you would like to know more about this, please ask your local care team.

 For the safety of everyone the following is put in place to ensure transmission risk is kept as low as possible;

  • Capacity for bookings is reduced to ensure that the resident children and young people can remain safely socially distanced. 
  • All staff and volunteers are tested regularly and have been offered vaccination
  • Areas such as sensory and soft playroom are only open for specific child per stay and deep cleaned before and after use.
  • Increase in cleaning around the hospice (including hand rails, door handles etc).
  • Only core staff entering care areas.
  • Reduced Visitors (see below). 
  • Prior to each child’s stay parents/carers are asked pre-screening questions.
  • On arrival to the hospice- temperature and pre-screening questions for everyone.
  • Staff wear PPE in accordance with Government guidelines.

Are there any circumstances when testing will be required?

  • As per Public Health England guidance, if a child is transferred to Demelza from hospital for step down care.
  • If a child or young person requires Aerosol Generating Procedures (AGPs) including; tracheostomy suctioning, Non-Invasive ventilation, Bilevel Positive Airway Pressure and deep suctioning, guidance at present requires them to have these carried out in their bedroom and remain in there for 1 hour post procedure. Staff are required to wear high level Personal Protective Equipment (FFP3 masks, face shield, gown and gloves). If a child or young person is able to have a PCR COVID-19 swab prior to admission, isolate until admission and then have a rapid result LFD test on arrival, and if both tests are negative, the child or young person does not need to stay in their room during their AGP and can have greater freedom of movement around the hospice. If it is not possible for the child or young person to be tested, that is not a problem and staff will carry out the procedure in the bedroom as per government guidelines.
  • Any family members staying/ visiting.

The unprecedented social-distancing and isolation measures in response to the COVID-19 pandemic has had an enormous impact on everyone, but especially for those of you who have no choice but to take extra precautions for those in your family who are most at risk. As we continue to adapt to a 'new normal' here are some useful links to help you and your family:

  • Together for Short Lives have put together this comprehensive Q&A with some excellent guidance for managing you and your child’s health around the COVID-19 concern.
  • The World Health Organisation have created a factsheet on how to help children cope with stress during the outbreak.
  • Kooth is a mental health organisation that offer free online counselling and advice to those who are aged 10-16 years old who do not want to talk face to face with someone.
  • There is a whole range of mental health support services listed in this document: Mental Health Support Links.
  • Family Fund; Grants to families living in the UK, with children aged 0-17 who have a life-limiting condition or a high level of need due to a disability or condition lasting 12 months or more. For more information and to apply, click here.

We understand that you may be missing your visits to Demelza. Here are some of the fab things our Care and Therapies teams have been working on for you to enjoy at home. Also look out for your weekly timetable of virtual events from Family Support and Therapies Teams.


Many families make friends with others who use Demelza’s services, because it’s comforting to connect with other parents, carers, grandparents and siblings who understand the challenges of caring for a loved one with complex clinical needs. We’re still here for each other and there are lots of ways to reach out.

  • If you haven’t already, join our Demelza Families Group on Facebook. Requests are verified by our Family Engagement team so you know this is a closed group for those accessing Demelza services with a support system of other parents and carers.
  • Together for Short Lives also have two closed Facebook Groups for families (one for bereaved families and one for those caring for a life-limited child). These are moderated by parents with support from Together for Short Lives staff. 
  • We’re here to listen. Our Care and Family Support Teams have been reaching out to families where possible to check in, and see if there’s anything we can offer support with. If you’re struggling with something that you think we can help with, please call 01795 845280 (available Monday-Friday 10am-4pm) or email us on FamilySupportDepartment@demelza.org.uk

Our teams are working remotely to continue raising awareness of what Demelza is doing to reach out – and hopefully raise much-needed funds too. If you’d like to get involved, here’s how!

  • Tell us your thoughts, concerns, or ideas for coping. We’re working on a project to show the impact the self-isolation measures are having on Demelza families like yours, how that affects you, and the great things you are doing to combat boredom, loneliness and risk of infection. To add your voice and tell your story, contact marketingandcomms@demelza.org.uk or ask for your care contact to put you in touch with the Communications team.
  • Get posting! Lots of you are active on social media and already following Demelza’s latest activity on FacebookTwitter and Instagram. If you’re recording or writing your thoughts, tag us in your posts or use the hash tag #DemelzaFamily and we will share where possible.