We are realigning our current care service offer to best suit the needs of families and ensure we make maximum use of the skilled and knowledgeable resources we have in our Registered Nurses and Health Care Assistants.

For families this means that we can provide more access to services at the times when families need it most. All current bookings made with families have been done with these small tweaks in mind, ensuring we remain responsive to the needs families have identified. We will also continue to prioritise end of life care at all times and access to our facilities also remains unchanged.

We are actively recruiting across our care teams at this time to ensure we are able to meet as much demand as possible, particularly at busy times.

If you have any queries, please feel free to contact us at 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.

• IASK (Kent) have collated an excellent bank of central resources for parents and carers, including guidance for vulnerable children and managing SEN provision.

• We’ve created a poster to help warn potential visitors/delivery drivers to take extra care around your home. You can download and print it here or email careadministration@demelza.org.uk to request a printed copy.

• The World Health Organisation have created a factsheet on how to help children cope with stress during the outbreak.

• There is some really comprehensive guidance from Young Minds with ideas to support your child or young person’s mental health. Kent County Council also have a range of online youth services.

• 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.

• For your own mental health, BACP have some practical tips on coping with anxiety around Coronavirus, and Mind have a compiled an extensive list of information and support for taking care of your wellbeing.

• 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.

• KLF Advocacy Service have provided a reminder of how referrals can be made and a flyer about their service. 

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.

• The Sensory Stories Podcast have some fun free tales to choose from and gives you everything you need to play along at home.
• Soundabout are running live music sessions on their Facebook page for people of all ages with severe and profound learning disabilities.
• Demelza has simple guides on Puppet Making, Story Stones, and Small World Ice Play - all simple, easy and free.
• We've also created our very own Demelza colouring in sheet featuring Dotty. Make sure you tag us in your finished pieces!

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 Facebook, Twitter 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.