Support Hub

Family Support Line

Our Family Support Line is available Monday to Friday, 9am – 5pm. Your call will be answered by one of our Family Support Workers, who will help you with your request.

Whether you need advice or support, have questions about respite, want to be referred for counselling or therapies, book a service, or would just like someone to talk to, we are here for you.

If you are aware of a family who may need our support, get in touch with us here.

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Overnight stays

We provide short notice overnight stays, as well as planned stays.

Short notice respite stays are provided to help you deal with unexpected situations, such as your child’s main carer being taken ill, deterioration of your child’s condition, major facilities failure at home or if you yourself as the main carer are struggling emotionally and / or physically.

Planned respite stays can provide you with much needed time to rest.

Stays at the hospice can give you the opportunity to leave your child in a safe environment where they will receive the specialist care they need, as well as lots of opportunities to socialise, to engage in activities and have fun utilising our specialist facilities. Currently we are able to allow one parent to stay in a family flat, so that you can enjoy time together.

Allocation of short notice respite is based on clinical assessment of need and availability. Allocation of planned respite is based on assessment via your local authority or clinical commissioning group.

For more information or to request an overnight stay, please contact Family Support

familysupport@shootingstar.org.uk
01483 230 974

Read more

Specialist Nursing

Our Specialist Nursing Teams are available seven days a week, 24 hours a day. They provide expert nursing advice over the phone and in person medical care, including the management of difficult and complex symptoms.

Our teams work alongside you and your child to help co-ordinate the wide range of professionals involved in your child’s care and ensure that the your wishes are at the centre of care provision and decision making.

Our symptom care is led by Dr AK Anderson, a consultant in Paediatric Palliative Medicine and a team of clinical nurse specialists trained in symptom management.

We work in collaboration with specialist teams at the Royal Marsden Hospital, Evelina London Children’s Hospital and Great Ormond Street Hospital to provide expert medical and nursing care.

Contact us for more information

01483 230960
familysupport@shootingstar.org.uk

Book time in our Sensory Room

Families can book a 45-minute slot in the Sensory Room at Shooting Star House on Mondays, Tuesdays, Thursdays, and Fridays. The supported child could be accompanied by either their parent or carer, using the facilities in the room to aid rest and relaxation, to enjoy the sensory experience, or to develop their abilities.

This unique room is suitable for children with a range of conditions and is equipped with sensory equipment including a musical floor, fibre optics, mirrors, lights, bubble tubes and a waterbed. The ball pond is currently closed due to infection risk. The room is cleaned thoroughly after each session.

Time in the Sensory Room can stimulate non-verbal communications in children with profound disabilities. Children can lose themselves in a story surrounded by lights, colours, and magical sounds, enjoyed by children and parents alike.

Before or after your session you can use the facilities in our dining room and enjoy our accessible garden. This is available between 10am and 3pm.

Book time in our Arts and Crafts Room

Families can book a 45-minute slot in the Arts and Crafts room at Shooting Star House on Mondays, Tuesdays, Thursdays, and Fridays. The supported child/sibling could be accompanied by either their parent or carer, using the facilities in the room for fun arts and crafts, or simply a safe space to relax on a beanbag, read children’s books, play, and enjoy our resources.

Arts and crafts act as a creative outlet and sensory experience for children, and the masterpieces they create become treasured items for families to keep.

Before or after your session you can use the facilities in our dining room and enjoy our accessible garden. This is available between 10am and 3pm.

Counselling support for parents

Our team of experienced and fully qualified counsellors can offer psychological support via telephone, online or in-person at Christopher’s or Shooting Star House. We can support you with a question you may have, or with ongoing sessions for you, or you and your partner together.

Counselling sessions offer the time and space to talk through concerns and difficulties that are making your day-to-day life challenging. Counselling sessions are confidential. In this safe environment, you are in control of bringing issues that are important to you, that you feel ready to talk about. If you’re not sure where to start, our counsellors will gently guide you through thinking about your needs and hopes.

Parents, couples and in some cases, grandparents can seek counselling support.

Psychological support is also available for children, young people, and siblings.

For more information or to request this support, please contact Family Support

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

To find out more about counselling

Read more

Emotional support for children and young people

Our team of experienced and fully qualified children’s psychological therapists can offer support direct to your child or a sibling through a series of sessions, or help guide you in supporting them. Face-to-face sessions can be accessed at both Christopher’s and Shooting Star House, where appropriate it is possible to offer sessions virtually.

Advice and support can be sought by parents wanting to learn how best to explain things to their child, for example the progression of their condition, or the expected death of a sibling. Parents can speak with a therapist at any time to talk about their child or a sibling, to work together to ensure their emotional needs are being met at home and at school.

Sessions are confidential so a child feels safe to share challenging and potentially harmful feelings they might be struggling with. This is carried out with frequent opportunities to work closely with parents and close collaboration with schools and professionals involved.

For more information or to request this support, please contact Family Support

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

To find out more about our support for children and young people

Read more

Complementary Therapies

Supported children, siblings and parents can benefit from complementary therapies at Shooting Star Children’s Hospices. Contact Family Support to request an assessment for yourself or a family member.

Currently in-person appointments are available at Shooting Star House on Mondays. We will let you know when appointments are also available at Christopher’s. Aromatherapy massage is used to help with deep muscle relaxation, and with emotional and physical symptoms you are experiencing. Complementary therapies take a holistic approach to supporting your wellbeing.

Virtual consultations are available to families, so that our Complementary Therapist can assess your needs and support you with a tailored blend of oils placed on an Aroma Stick and delivered by post to your home, and a programme of exercises for you to follow. This can assist with a range of concerns such as anxiety, stress, panic attacks, sleep difficulties or headache.

For more information or to request this support, please contact Family Support

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Read more about our virtual therapies

Virtual therapies

Splash! Book a Hydrotherapy session

You can now book sessions in the hydrotherapy pool at Christopher’s and Shooting Star House using our online booking system.

Hydrotherapy can provide physical benefits such as helping muscle tone and strength and enabling mobility not possible out of water. For all families it can provide fun and memorable experiences and emotional benefits to enjoy together.

Children and young people using long term ventilation in the daytime, and those with tracheostomies should book hydrotherapy sessions at Christopher’s only. There is a nursing team present at Christopher’s who will be able to assist should an emergency arise. There is currently no nursing team present at Shooting Star House.

Families are asked to book a maximum of 12 sessions per year, to make sure the pool is available to as many people as possible.

Contact Family Support with any queries

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Our resources for families

We have created these resources and help sheets especially for our families.

This includes activities that everyone in the family can share in together, building memories, resilience, and well-being together as a family. There is also a resource pack especially for siblings, with other sheets focused on building good mental health.

Our resources include help sheets. We recognise difficulties our families frequently face and we want you to have access to immediate advice and support via this hub. Equally we strongly encourage you to call us to talk about your specific situation, so that our experienced and skilled therapists can understand you or your child’s needs and tailor strategies especially for you.

Download our guide to Apps that support mental health

Download our Mindfulness family activity pages

Download our Siblings activity pages

Download our guide to Supporting children with anxiety

Download 10 sensory activities to do at home

Download our guide to The importance of sleep for children

Though we recognise the internet is full of information, these resources are specifically created with you in mind. They have been put together by skilled mental health professionals, and include ideas contributed by families we have supported over the years.

For more information or to request advice, please contact us via the Family Support Line:
Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Activity Packs

We can post an activity pack to you at home, these are put together especially for supported children and siblings of all ages and abilities. Packs are carefully tailored to what your child enjoys, and materials appropriate for their stage of development/ability.

These fun packs are great for children to enjoy on their own or with other family members, particularly if you are isolating, shielding, or wishing for activities to complete in the safety of your home.

You might request a pack because you are finding it difficult at home, for a sibling or child experiencing a challenging time, or simply to enjoy playing and being together.

You can order a pack through Family Support, and we can have these posted to you in a jiffy.

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Bereavement Support Hub

Many of our families and their friends find it helpful to know about the support we provide to a family when their child dies. Our Bereavement Support Hub holds a wealth of information about how we care for and support families at this time.  If you have any further questions we want you to let us know, please contact our Family Support Team so that we can answer these for you.

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Hospital support

Our Family Support Team can facilitate a hospital sitting session if your supported child is in hospital for a prolonged stay.

Our Family Support Worker can engage with your child or young person with age-appropriate activities or simply sit with them. This enables you to have a short break to attend to your own needs or to spend time with your other children.

Contact Family Support to request a Hospital Sitting session

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Online and In-Person Events

Having the opportunity to meet with other children, siblings, parents, and grandparents can be hugely beneficial for family members. Our groups are designed to help you share ideas, tips and to support each other.

Regular events include drop-in sessions for parents and children and social events for supported and bereaved siblings.

Many of our events include activities designed especially for children or specific family members, as well as opportunities for families to attend together and enjoy adding to their collection of special memories together as a family.

View events

Interactive sessions

Our Family Support Workers can provide a set of 2-6 interactive sessions for supported children, supported siblings, or bereaved siblings who might benefit from this one-to-one time.

These can help a child / young person with confidence, help them become familiar with one of our hospice sites or provide one-to-one interaction (this has been especially helpful to children / young people who have been isolating). If you feel your child could benefit, we will organise an assessment.

These interactive sessions can be delivered in the hospices or in your home, moving into the hospice environment when appropriate. The frequency and content of the sessions are planned in the best interest of the family, using play to help engage and support the individual.

Sessions are adapted for young people, or to meet the needs of children with complex disabilities.

Contact Family Support for more information

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Catch-up meeting

Catch-up meetings give you the opportunity to talk to us in detail about how things are going and find out what services or support is available.

The meeting helps us understand your child’s current needs as best as possible, and we can answer any questions you may have about our service.

You can request a catch-up meeting any time. Catch-up meetings are often helpful if there’s been a change in your child’s condition, if you are not accessing our overnight stays regularly or if we haven’t seen you for a long time. The meetings can take place over the phone, online or in person at your request.

Contact Family Support to request a catch-up meeting

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Family Referrals

Referrals to our service can be made by a family directly or by anyone involved with a family who may need our services. For information on referrals, our catchment area and acceptance criteria, contact us on:

Telephone – 01483 230960
Email –  referrals@shootingstar.org.uk

Read more

End-of-Life Care

We provide end-of-life care through our dedicated team of professionals – including our in-house and community nursing teams and our symptom team of clinical nurse specialists. We work in collaboration with palliative care teams at the Royal Marsden Hospital, Evelina London Children’s Hospital and Great Ormond Street Hospital to provide expert medical and nursing care, either at Christopher’s or in the home, 24 hours a day.

Contact us to speak to a member of the team

Telephone – 01483 230960
Email – familysupport@shootingstar.org.uk

Read more

Willow Suite and Cuddle Cot

We have a dedicated area at Christopher’s, with a private room where a child can lay at rest. This allows you and your family time to say goodbye in a safe environment, supported by an expert care team.

We can also provide cold blankets and cuddle cots. A cold blanket chills a mattress allowing the body of a child who has died to be preserved so that their family can spend extra hours or days with their child. This specialist equipment is especially important for parents who wish for their child to be at home in their final days, rather than an our hospice or hospital.

Our care staff are trained in the use of cold blankets and cuddle cots and helping family members understand how to use them.

Contact us for more information

Telephone – 01483 230960
Email – familysupport@shootingstar.org.uk

Read more

Accessible Playground and Gardens

The accessible playground and garden is available for supported children, siblings, and families to use at Shooting Star House. This includes a wheelchair accessible roundabout and swing, a bucket swing, open grassy area, and patio area. We are excited to be in the initial stages of a fresh design for the garden.

You may choose to access the garden before or after using our inside facilities or attending an appointment between the hours of 10am and 3pm.

We ask that families contact Family Support to book a visit before coming to either hospice

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Physiotherapy

Our physiotherapist can provide sessions for supported children staying at Christopher’s or pre-booked sessions at Shooting Star House. Families can telephone our physiotherapist for advice at any time.

Physiotherapy sessions may involve carrying out chest physiotherapy as part of a child’s respiratory management, carrying out a range of movement exercises and giving advice on using equipment. We can provide specialist advice about 24-hour postural management and positioning, which is vital for children who cannot change their position on their own.

Sessions can take place in our Sensory Rooms, Arts and Craft rooms, bedrooms, and the hydrotherapy pools. The warmth of the water helps to relax tight muscles, reduce painful joints, allow more movement, improve circulation, improve self-confidence, and provide a relaxing sensory experience for the child.

To request physiotherapy or book hydrotherapy please contact Family Support

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Food Bank Vouchers

For families in need, we can provide vouchers to use in a local food bank close to where you live.

Contact Family Support to request vouchers

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Legal Advice

Together for Short Lives (the national body for children’s hospices) in partnership with Law Works matches families up with a legally trained expert, who can provide free legal advice and support.

This service can help families access free support they are entitled to when legal duties owed to the children and families are not being fulfilled, whether that be housing adaptations or having the right care package in place.

Families living in England or Wales who care for a child (up until their 25th birthday) can access this support for free.

Call the Together for Short Lives Helpline (10:00am to 4:00pm Monday to Friday) or email:

Telephone – 0808 8088 100
Email – info@togetherforshortlives.org.uk

More information is also available on the Together for Short Lives website.

Read more

Access Wishes

We are here to make every moment count for the families we support. We want to help create lasting memories for supported children, and their families.

We can help families find charities and organisations that create wishes or can organise your child’s wish ourselves. We will do everything we can to create a very special memory.

Contact Family Support for more information

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Transitioning to adult care

For young people moving from children’s services into adult services this time can be very scary, challenging, and confusing. Our Transition Coordinator can help the young person and their parents navigate these changes.

The Transition Coordinator can accompany you on visits to assess if a new service is right for you.

Contact Family Support for more information

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Parent User Group

Our Parent User Group is an informal and space for sharing ideas, views, and experiences about different aspects of our care.

Why not join a virtual session with one of our Care Trustees to discuss ideas, opinions about new initiatives, and what’s working well or not? Or come along to ask us any questions you may have about our current service.

Your experiences are very important to us. We use these sessions to help learn and shape our care services to ensure we deliver the very best care to families.

Contact Family Support for more information

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Christopher’s

Overnight stays and day time Family Support Services are currently accessible at Christopher’s. Call Family Support to determine whether your child can benefit from this service.

Due to pandemic, we have the following guidelines in place when visiting Christopher’s.

One parent can stay with their child during residential care.

Other family members will be able to visit, but with entry via the garden, and is limited to two visitors at a time.

Face-to-face appointments with our Family Support Team are available on site.

Visitors aged 12 years and above will need to provide evidence of a negative Lateral Flow Test on arrival. Those who have tested positive for Covid during the last 90 days are exempt from testing. Visitors under 12 years will have their temperature taken when they arrive. 

All guests must wear a mask as you move around the buildings and socially distance where required.

Please get in touch with Family Support if you have any  questions ahead of your visit.

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Find out more about Christopher’s

Read more

Shooting Star House

Day time family support services are accessible at Shooting Star House. Due to the pandemic, we have the following guidelines in place when visiting Shooting Star House.

Face-to-face appointments with the Family Support Team are available on site as well as independent visits to use the facilities (Sensory Room, Arts and Crafts Room – available until 31 March). Hydrotherapy is accessible to some families. Several groups and events take place on site at Shooting Star House. 

Visitors aged 12 years and above will need to provide evidence of a negative Lateral Flow Test upon arrival. Those who have tested positive for Covid during the last 90 days are exempt from testing. 

Visitors under 12 years will have their temperature taken when they arrive. All guests must wear a mask as they move around the buildings and socially distance where required. 

Please get in touch with Family Support if you have any  questions ahead of your visit.

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Find out more about Shooting Star House

Read more

Find Financial Support

We understand the financial challenges families living with a child with a life-limiting conditions may face, and we are able to recommend and source organisations that can help.

Our team can help make what can be a very daunting task much easier. We are there to help you understand what support is available, from sourcing specific equipment, and funding for household items to special experiences.

Contact Family Support for more information

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Social Worker support

Navigating the system can be difficult. Our Social Workers are on hand to help guide you and find out what further services or professionals may be available to support your family’s specific needs.

Contact Family Support for more information

Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Wellbeing

Young Minds

Tips, advice and where to get support for your child’s mental health in general and specific advice for during the pandemic.

Find out more

Mind

Lots of practical advice and information for managing your mental health during the pandemic.

Find out more

Every Mind Matters

NHS information with a mental health wellbeing app to download,  as well as advice and links for immediate support.

Find out more

Anna Freud Centre

A page bursting full of self-care advice for young people laid out in an accessible way.

Find out more

Calm

Popular mental health mobile app, also available via website (link below) that includes sleep stories, meditation, mindfulness, help with stress, anxiety, anger and difficulty sleeping.

Find out more

Headspace

A mobile app (link to website below) which helps you bring mindfulness into your everyday life. Lots of interactive exercises, tips and ideas.

Find out more

Services in your area

Find and navigate the Local offer in your area specifically for families of children with complex needs and disabilities.

• Brent
• Croydon
• Ealing
• Harrow
• Hammersmith and Fulham
• Hillingdon
• Hounslow
• Kensington and Chelsea
• Kingston
• Lambeth
• Merton
• Richmond
• Surrey
• Sutton
• Westminster

Faith support

We support families from all faith backgrounds and are committed to expanding our knowledge and improving our practises. Religious leaders are welcomed at the hospice. If you would like us to arrange a visit from a leader of any particular faith, please speak to a member of the care team.  Alongside our knowledgeable staff we also have Church of England vicars who have an association with each of our hospices. They visit the hospices regularly and are available to explore life’s big questions and support you in your faith.

Please contact us to access faith support familysupport@shootingstar.org.uk 01483 230 974

Spirituality support

Spirituality is embedded in our hospice values and in all our work with families. We recognise that spirituality means different things to different people. We want to make sure everyone feels comfortable with the hospice care they receive, as everyone’s values, thoughts, beliefs and ideas are important to us. We welcome any suggestions, questions or requests you may have to ensure our good practice;

Please email spirituality@shootingstar.org.uk with non-urgent enquiries.

For more pressing matters please contact:
Telephone – 01483 230 974
Email – familysupport@shootingstar.org.uk

Explaining coronavirus to children

Free digital book explaining coronavirus to children illustrated by Gruffalo illustrator, Axel Scheffler, or play the audio book version narrated by Hugh Bonneville.

Find out more

Useful links for families

Below are a few websites which provide useful information to families, like yours, who have a child with a life-limiting condition.

Together for Short Lives
Together for Short Lives is the national charity for children with life-limiting conditions.  They support families, professionals and services, including children’s hospices.

Hospice UK
Hospice UK is the national charity offering services to support hospice and palliative care professionals across the UK.

Child Bereavement
Child Bereavement provide support to families to help them to rebuild their lives, when a child grieves or when a child dies.

Contact a Family
Contact a Family is committed to ending the poverty, difficulty and isolation experienced by families with disabled children across the UK.

Winston’s Wish
Winston’s Wish offer practical support and guidance to bereaved children, their families and professionals.

Sullivan’s Heroes
Sullivan’s Heroes is a charity offering fundraising support and financial assistance for families raising essential funds towards vital home adaptations for a disabled child.

Sibs
The Sibs charity provides a huge amount of information, resources and support for parents caring for the siblings of disabled children as well as adult siblings.

Cruse Bereavement Care
Cruse Bereavement Care offer support, advice and information to children, young people and adults when someone dies, and to enhance society’s care of bereaved people.

Disability Benefits Helpline
Government website for advice on Disability Living Allowance, Attendance Allowance or Personal Independence Payment.

Citizens Advice – benefits
Information on benefits and tax credits if you are working or unemployed, sick or disabled, a parent, a young person, an older person or a veteran.

Keeping children entertained

Bag Books

Bag Books is a charity that offers free Do It Yourself multi-sensory books for children with learning disabilities – stories told interactively through voice and emotion rather than words and pictures.

Find out more

Story Massage

Story Massage is ideal for young children – something calm and relaxing to do with them, maybe before bed. Led by author and therapist, Mary Atkinson, who will be posting regular live broadcasts on the ‘Story Massage Programme’ Facebook page.

Find out more

Disney Dance-Along

Get moving, learn fun routines and workout whilst singing and dancing along to Disney songs!

Find out more

Cosmic Kids Yoga YouTube Channel

Yoga and mindfulness videos for children, designed for children aged 3+, used in schools and homes all over the world.

Find out more

Bumble Bee Physio Facebook Videos

Video catch up and live children’s physio session for all abilities.

Find out more

Science Museum

Interactive science and maths activities, resources, games and apps, including activities from items that can be found in the kitchen!  Activities can be browsed by age range.

Find out more

Animal Webcams

A range of animals that you can view via webcam from farms, zoos and wildlife parks all over the world.

Find out more

Fun Activities for Children from Home-Start

A great range of fun activities and suggested games for the families with younger children.

Find out more

Stoma Stoma Colouring in Book

A downloadable PDF colouring book featuring animals like the Hippopostomy and Tracheosaurus to colour in – a great activity for children who might be feeling self conscious about their devices.

Find out more

Explaining coronavirus to children

Free digital book explaining coronavirus to children illustrated by Gruffalo illustrator, Axel Scheffler, or play the audio book version narrated by Hugh Bonneville.

Find out more

Downloadable Local Offer Guide

This great guide from the Council for Disabled Children helps you to find and navigate the Local Offer that every local authority will have specifically for families of children with complex needs and disabilities.

Find out more

Music Apps

Cove

Music creation, expression and journaling app. Recommended by Guardian as one of the top mental health apps and on the NHS app library (only available on iPhone / iPad).

Apple App Store

GarageBand

A deceptively powerful app in which you can play a range of touch instruments – keyboards, guitars, strings, drums. You can record tunes and external sounds including voice and you can make loops (only available on iPhone / iPad).

Apple App Store

Xylophone

Very simple apps – just like playing xylophone. You can play single notes or chords.

Apple App Store

Android Play

Echostring

A lovely harp sound with different chord options and a colourful interface. You can record as you play.

Apple App Store

ThumbJam

Paid for app available for the iPhone or iPad, with over 40 real instrument sounds and hundreds of included scales allowing you to play in any style, from rock to classical.

Apple App Store

Bloom

Paid for app that you can use by simply tapping or dragging a finger on the screen to produce gentle visuals and calming music that regenerates over time. Very soothing, visual and accessible.

Apple App Store

Android Play

Audanika

Paid for app which allows you to create harmonic patterns very easily. This is quite a sophisticated app with a lot of different settings available, so you may want to spend some time exploring all the options.

Apple App Store

Magic Piano

This free app (with in-app purchases) gives you tunes to play which require some dexterity, but there’s also the option to play freestyle. There are different options of keyboard layout.

Apple App Store

Android Play

Bebot

A paid for app where a singing robot produces sound as you run your fingertip along the screen.

Apple App Store

Android Play

Thicket

Paid for app. Touch the screen to hear and see what happens. You can save the image you have created as a picture file.

Apple App Store

Sansula

A simple kalimba, or thumb piano, which you can play like the real thing.

Apple App Store