We walk alongside our families from diagnosis, through treatment and beyond.
For families, we offer an outreach service of emotional, social and practical support to families based in the South East, principally from Berkshire, Surrey, Hampshire, Buckinghamshire and Oxfordshire.
To apply for outreach support please fill in our referral form (here).
"We have a real sense of belonging. The Trust brings people together with something in common and who understand what you are going through."
When Harry Orland was diagnosed with leukaemia at the age of eight, mum Sally found it difficult to cope. Dealing emotionally with the bombshell was difficult for the family, but also the practical logistics of managing hospital stays, looking after Harry’s older sister, Charlotte, and juggling work was also extremely difficult.
While in Wexham Park Hospital, the family were put in touch with Sebastian’s Action Trust and outreach worker, Claire Mann, met them and explained the support the charity could offer them. The youth support service offered for Charlotte by Katie Cowie was described as a ‘godsend’ by Sally. Charlotte was in the middle of studying for her 11-plus exams and the extra support and attention Katie was able to provide assisted her enormously, at a time when her parents naturally needed to focus more on Harry.
Harry’s condition means a lot of the activities and venues enjoyed by boys his own age are not an option for him. His environment needs to be clean and safe to prevent the risk of infection. Harry has been able to enjoy activities like arts and crafts at the Family Outreach Hub - a safe and relaxed environment. It also gave him an opportunity to meet other children in similar situations. A real highlight for Harry was a visit to an aquarium organised by the Trust. At a time when Harry’s social life was quite restricted, this first trip following treatment without his parents gave him a real sense of independence and a chance to forget the rigours of hospital treatment schedules for a while.
As a family, the Orlands have enjoyed a number of events put on by the Trust, including Christmas in July, which enabled them to enjoy precious family time together. Stephen has been to Dads’ days and, before going back to work full-time, Sally enjoyed being able to relax at the Hub knowing the children would be safe and entertained.
"We like having someone on the end of the phone to be able to speak to when we have any questions or problems."
Garima’s and Anurag children Aayushi and Ojas both have the same condition, Spastic Tetraplegia. Aayushi is 13 years old and Ojas just 2 years old. Anurag works away at
times and very long hours to support the family financially. The Trust have supported the family for the last year and a half. The condition means they are unable to move independently as all four limbs are affected, they become very rigid and unable to move freely, they also have limited sight. So they both need constant support and care. The family are supported by carers, but obviously not for the full 24 hours. This means Garima has little time and support for her self.
Due to the nature of the children’s complex needs, the Trust are unable to support the family with their medical care needs, but are able to support the family in so many other ways.
Aayushi attends school daily, but as Ojas is still only 2 years old, he needs to be cared for for 24 hours, along with carers support at times. The Trust have been able to provide practical support by driving them to hospital appointments to ease the burden on Garima. The family’s Outreach Worker also accompanies the carer to swimming lessons/ or sensory play sessions for Ojas , which then allows Garima to have time alone and catch up on rest or treat herself to some Wellbeing either at home or in the Trust’s Hub. Garima has also attended some Chill & Chat events and has also brought Ojas to music therapy sessions in the day, where again she can talk and have some time out.
Aayushi and Ojas are always invited to events that they can both attend and Dad Anurag has also participated in the Trust’s Dad’s events such as Go-kart racing.
The emotional, social and practical support has and still is being offered by the families Outreach Worker, to give them a better quality of life they may not be able access elsewhere.
"We have looked at Hospices and as great as it would be for us to stay there for a break as they do everything which would give Lorraine some respite, the facilities aren't as welcoming or as nice as The Bluebells. Even though we would still have to look after Jacob, it would give us a chance to have some quality time as a family. There is so much spcae for all the boys and the pool will be fantastic for all 3 of them." - Nigel Fleetwood
The Fleetwood Family joined the Trust family in February 2016. Youngest son Jacob, 3 years old, has Cerebral Palsy, seizures and chronic lung disease. The family consists of Mum Lorraine, Dad Nigel and two other boys – Coby 9 years old (who has Congenital Adrenal Hyperplasia) and Kaiden who is 8 years old.
Sebastian’s Action Trust help the family with Emotional and Sibling support. Lorraine and Nigel also receive help from other services such as Rainbow Trust, Homestart who do weekly visits and both Coby and Kaiden attend Young Carers. However, the support from the Trust is
For Lorraine, support whilst Husband Nigel is away is vital. Nigel is in the Navy and often gets postings, leaving Lorraine to look after the three boys on her own, which is quite stressful. The Trust Outreach Workers can help support Lorraine through those times.
It is also important for them to enjoy spending time together as a family. The Bluebells offers families a break away together, removing them from the strenuous hospital visits, Doctors appointments and routines.
The family are also keen on the activity days, not just for Jacob but to give Coby and Kaiden a chance of a break. The two older boys recently attended the Lego Play Day at The Bluebells with Nigel, where they all enjoyed building Superheroes out of Lego bricks and playing in the gardens at The Bluebells.
The Trust’s Christmas in July event was also a big hit with the Fleetwood family. All three boys attended and met with Santa, as well as enjoying the Pirate themed activities. Nigel said “Coming to things like Christmas in July gives us a chance to do things as a family and for the boys to all have fun outside of the house together. It’s such a wonderful atmosphere and so friendly and welcoming.”
"We would like to thank Sebastian 's Action Trust for giving us a helping hand in the most difficult moment of our lives. Thank you for the emotional support, every conversation and the time you spend with us. We would also like to thank you for the financial support, without which it would make things harder. We realise how many families are in a similar situation, so we appreciate your help even more."
The Trust have supported the Balsam family for the past two years since their youngest daughter Oliwia was diagnosed with a kidney cancer known as Wilms’ Tum
our. From the point of initial referral time at our Hub in Slough and The Bluebells, access to the Trust’s extensive calendar of events and one to one support from our team of outreach and child support workers gave the family opportunities to spend time together away from hospital, building precious memories that now sustain them through the most difficult path any parent or sibling could face.
Sadly Oliwia died in January, leaving the family bereft at the prospect of a lifetime without their beloved daughter and sister. The Trust offered discreet support through every twist and turn of Oliwia’s illness and in the months after her death our presence has continued, in accordance with the family’s wishes. As the family originate from Poland, there was an absence of close family members to help with funeral arrangements so the Trust team stepped in to help plan a celebration of life that befitted four year old Oliwia, as well as supporting her heartbroken older sister Emilia. The Slough Hub became a private place to where the family and friends could retreat immediately after Oliwia’s funeral- where stories of Oliwia’s courage, charm and zest for life were remembered and shared.
Helping to determine a beautiful place for Oliwia’s ashes to be scattered has been another important way in which the family’s outreach worker Claire has been able to offer meaningful support. Regular visits, followed up with discreet telephone messages have helped parents Alex and Bart to feel connected to the Trust, never alone, at a time when the services associated with Oliwia’s illness have naturally ebbed away and friends have stru
ggled to know how to help.
Over the past seven months Emilia has been closely supported by our team, helping her to find a safe place where she can articulate her thoughts and feelings without the worry of upsetting Mummy or Daddy. Through the Trust’s Butterfly Support Programme, our bereavement care workers are able to help siblings and parents to normalise their feelings, even in the most abnormal circumstances, and to find coping mechanisms to sustain them particularly through the dark days, weeks and months to follow.
We would like to share with you some of our families’ stories:
The Fleetwood's Story
Spending quality time as a family when a child has a complex health condition can be difficult and often doesn't happen. Read more
The Balsam's Story
Losing a child at any age is the most difficult path any parent or sibling could face, especially when the support network of close family are in another country. Read more
The Agrawal's Story
Coping with one child with complex health needs brings many stresses and complications. Having two children with the same condition can bring additional stresses and strains. Read more
The Orland’s Story
Dealing with a serious illness can affect children socially. having to be in a sterile environment can be isolating, as they cannot mix with children their own age. Read more
We walk alongside our families from diagnosis, through treatment and beyond
Our Family Services team has been providing many forms of emotional, social and practical support to families with seriously-ill children since 2004. Our outreach provision is regionally focussed on families in Berkshire, Bucks, Surrey and Hampshire, with a limited service to families in Oxfordshire.
Our Family Support Workers offer a service in the family home and local community which is flexible and tailored to the needs of each family member, including the parents, siblings, grandparents and other significant carers.
To find out more about the support we offer, please click on the links below:
We currently support over 400 families across the South East.
“Having my outreach worker and The Trust in our lives for the last two years has been wonderful. The practical and emotional support you have offered to myself and my family has been amazing. We all feel very at home in The Bluebells and really feel like part of a big family of families”- Felicity Etherington
We recognise that having a child with a life-limiting diagnosis has a varied and distinct impact on every member of the family. Our Outreach Workers come alongside families to assess their needs, in order to create a bespoke, holistic care plan.
Outreach workers are trained to be able to help support families emotionally, practically and socially in a variety of ways. This could range from providing a listening ear, practical assistance in getting out of the house, to organising events to introduce families who are similarly affected.
“…as a result of the support I receive I am more able to support my child and family”.
“Having someone understand my children was extremely useful. The team were amazing and really helpful”.
We provide child support work, not only to the child with complex health needs, but also their siblings, recognising their distinct emotional, social and practical needs.
Child support workers, through the use of engaging and age appropriate activities, create a safe and fun space for children and young people to talk openly about their needs. Support can be provided in home, school, hospital or at our premises.
We support children and young people from 0 - 19 years old.
“My finance and welfare worker was wonderful. She was informative, helpful and understanding. I was overwhelmed by the task of trying to get wheelchair funding and don’t think I could have faced filling in the forms without her assistance”.
Having many professionals involved in your child’s care can be overwhelming and knowing what you need, want and can access for your child can feel like an impossible task.
Our Finance and Welfare Workers are trained to be able to help in a myriad of ways, including:
- assessing your eligibility for benefits
- assisting with charitable application forms for specialist equipment or necessary housing goods
- advice and guidance with completing DLA and PIP forms
- advice on EHCP’s
- creating budget plans and advice on repaying debts
- assistance with housing adaptation needs
- assistance with seeking increased respite
- accessing holidays
- attending critical meetings to provide emotional support so you don’t feel isolated in a room full of professionals and being a third party record of what has been discussed
Our workers can help provide the scaffolding of support necessary for parents to advocate for their child’s needs as well as their family’s needs.
From evaluations, 85% of parents asked said they felt better able to support their child due to help from Sebastian’s Action Trust.
We are, from inception, family-led. We aim to walk alongside families from diagnosis, through treatment and beyond. Our service has evolved from listening to our families and striving to address their unmet needs. We focus on finding ways to emotionally, socially and practically support individual family members, as well as the whole family unit, recognising that a young person’s complex health needs impact on each and every one in a myriad of ways.
To provide respite breaks in our purpose-built facility, The Bluebells
To provide outreach support across the southern counties of Hampshire, Berkshire, Buckinghamshire, Oxford and Surrey.
Who We Support
Family units and individual family members, where there is a child or young person aged 0-19 with a life-limiting or life-threatening condition.
Families and individual family members who have suffered the loss of a child, sibling or grandchild.
The Bluebell’s - respite breaks:
We provide respite holiday breaks to families throughout the UK, responding to an enormous demand for our services. More information on The Bluebells can be found here. To apply for a break please fill in our application form (here).
We offer an outreach service of emotional, social and practical support to families in the South East, principally from Berkshire, Surrey, Hampshire, Buckinghamshire and Oxfordshire. To apply for outreach support please fill in our referral form (here).
Frequently asked questions about eligibility for a Family Respite Break at the Bluebells
Click on a question to reveal the answer.
1. Who can apply for a family respite break at The Bluebells? ↓
Sebastian’s Action Trust accepts applications for families of babies, children and young people up to their 19th birthday, who have life-limiting or life-threatening conditions. Referrals will be considered for families from across the UK.
2. What is meant by life-limiting or life-threatening? ↓
To meet our criteria the child’s condition(s) must fall within the NICE guidelines
These fall into four main groups and are described below:
Group 1 – Life threatening conditions for which curative treatment may be feasible but can fail. (e.g cancer, irreversible organ failures of heart , liver, kidneys.)
Group 2 – Conditions where premature death is inevitable. (e.g. cystic fibrosis)
Group 3 – Progressive conditions without curative treatment options. (e.g. Batten disease, mucopolysaccaridoses, muscular dystrophy.)
Group 4 – Irreversible but non-progressive conditions causing severe disability leading to susceptibility to health complications and likelihood of premature death. (e.g. cerebral palsy, multiple disabilities such as brain or spinal cord insult.)
3. When allocating holidays, is there a set of criteria against which families are prioritised? ↓
In order to ensure families are allocated breaks on a needs basis, priority will be given to families where a child or young person falls within the following:
- Immediate threat to life
- Life threatened where premature death is inevitable
- Ongoing complex or palliative care
4. Who can make the initial application? ↓
We are happy to take applications from families directly, members of their healthcare team or other professional organisations acting in the best interests of the family.
Once the application form has been completed and received at The Bluebells we aim to send an acknowledgement of receipt within ten working days.
For those wishing to discuss a possible referral prior to completing the application form please call Lauren Harris at The Bluebells on 01256 391854.
5. Can a family request a specific date for a break at The Bluebells? ↓
Preferred dates can be requested on the application form but we reserve the right to offer breaks as availability and eligibility dictate- we simply cannot accommodate every request for the school holiday periods, for example. We aim to work with families to ensure breaks are provided at times that fit with each family’s commitments but there is the need for a flexible approach at times.
6. If my family cannot attend for the time offered can I rebook? ↓
If the cancellation occurs because of a change in the child’s condition we will try to offer an alternative date within the next 12 months.
7. How long are breaks at The Bluebells? ↓
Generally speaking breaks are offered from a Friday (10am onwards) to a Tuesday (departure by 1pm).
We also offer crisis breaks to families from a Tuesday (after 2pm) until Friday departure by 10am) where there is a desperate need for a break owing to a rapid deterioration in a child’s condition, recent discharge from hospital or other critical, unforeseen circumstances.
8. Is there a charge for a Bluebells break? ↓
It costs the Trust in the region of £3000 per week to fund The Bluebells alone, which is only part of the service provision we offer to families of seriously-ill children. As a charity that does not receive any statutory funding we work tirelessly to raise this sum, recognizing that many families are financially disadvantaged when struggling to cope with the enormity of their child’s condition.
We ask for a family contribution of £100 towards each respite break, which is only a fraction of the true cost borne by Sebastian’s Action Trust. We do, however, understand that for some this may be difficult to achieve and where necessary we will work with families to agree a reduced sum. We would never prevent a family from experiencing a break at The Bluebells because of an inability to provide a contribution.
There is no contribution request for midweek crisis breaks at The Bluebells.
9. Can bereaved families apply for a break at The Bluebells? ↓
We have had many families stay at the Bluebells after the death of their child. We try to reserve weeks so that Butterfly Families (The term we use for those who are bereaved) can use our house at times when other families are not staying, to ensure appropriate sensitivity to all concerned.
10. If I want to apply, what do I do next? ↓
Please complete the Bluebells’ application form, ensuring full disclosure of the child’s condition and details of a relevant health professional who can provide verification of the information given.
From one little boy’s special wish, great things have come...
We are a charity developed from the last wish of one very special nine year old boy just twelve days before he died of cancer in 2003. Sebastian’s aim was simple, yet vital for those facing the loss of a beloved child; he wanted to create a private place where lifelong memories could be made, even if that life was to be cruelly cut short.
Sebastian’s wish became a reality in July 2011, when The Bluebells, our purpose built facility funded, designed and constructed by the charity opened its doors. Nothing like this previously existed in the UK, making The Bluebells the first of its kind and Sebastian’s vision all the more exceptional.
Through The Bluebells, our purpose is to help families reach beyond their child’s illness or disability and enjoy time together, away from the rigours of hospital, gruelling treatment schedules and prying eyes. Our work now extends further with a geographically restricted outreach service providing emotional, social and practical support to help entire families through good, bad and the most challenging of times.
A message from Sebastian’s Mummy, our CEO Jane Gates:
“From the inception of an idea borne out of the personal experience of spending so much time in hospital away from loved ones, Sebastian set us on a remarkable journey that has allowed us the privilege of walking alongside so many families who face extraordinary challenges on a daily basis. I am proud of our ever evolving service that strives to address the unmet needs of those we support, who have become a ‘family of families’ united under the umbrella of Sebastian’s Action Trust”.
We understand the utter devastation that comes with the loss of a child or young person.
At Sebastian’s Action Trust, we offer continuity of care by walking alongside families of life-limited children from diagnosis, through treatment and beyond. When a child dies, we continue to hold the family as part of our ‘Butterfly Family’. Bespoke support is offered in a number of ways; one-to-one and group emotional care, time for remembrance and thanksgiving, and opportunities to meet other bereaved family members, in the knowledge that only those who have experienced such tragedy can truly understand the depths of such loss.
We do, however, recognise that many families face the loss of a much loved child or young person through other circumstances, and we aim to support in the most appropriate manner. We work collaboratively with a number of external organisations and where necessary will signpost families to other services that might offer additional support.
In addition, we retain the discretion to offer ‘butterfly breaks’ for families across the UK at our respite home, The Bluebells. Bereavement support is offered across the Southern counties of Berkshire, Buckinghamshire, Surrey, Hampshire and Oxfordshire.
To find out more about our bereavement support and advice, please email Benvenuta@SebastiansActionTrust.org.
The Hub - A place to drop-in, have fun, seek advice and unwind.
“We have had a lot of support from the charity. This included help with forms, a lot of useful advice and always being made to feel welcome at the Hub”
Whilst exploring the unmet needs of our families, we have gone one stage further to create a warm and welcoming place for the whole family to access therapeutic care and vital information.
We opened the doors to our Family Outreach Hub in Slough in September 2014. The Hub is primarily available to our Berkshire, Surrey and Buckinghamshire families as a centre where they can access many forms of emotional, practical and social support.
- - Advice, advocacy and guidance
- - Counselling
- - Assistance with exploring funding options for specialist equipment and services
- - Access to wellbeing and music therapy
- - Bereavement care
- - A whole host of activities for both sick children and their siblings.
The Hub is a safe, comforting environment where troubles can be shared, solutions to problems identified and stresses can be alleviated.
Since its opening, many of the families we support have enjoyed chill and chat sessions, music sessions, themed parties, wellbeing treatments, art and creative workshops as part of a continually evolving programme of events.
“Keeping involved with The Trust helps my family through bereavement”
We understand that losing a child – whether by a miscarriage, stillbirth or the death of a child – is an overwhelming experience. And for many, grief feels like a permanent state of sadness from which they will never recover. The experience of grief can also be surprising; you may have emotions that feel inappropriate, good friends may say the wrong things, and your spouse, partner or children may respond very differently. We want bereaved parents, siblings and other family members to know that they are not alone. Your feelings do make sense, and although it may seem completely unbelievable, you will be able to learn to live with this loss in your life and still find hope.
Recognising that grief is an individual response to loss, we aim to offer:
- A listening ear. We can provide initial one-to-one support as well as the chance to meet up in pairs or with other family units with bereaved parents or siblings
- Opportunities to meet families, share experiences and laugh and cry together at organised activity days
- Practical advice with funeral arrangements
- A lending library of books, DVDs and other materials that might help to explain the feeling of loss and the grief path
- Continual access to our services and events, including breaks at The Bluebells
Our calendar of events for our families
“The sibling days have had a hugely positive impact and have led to great friendships being developed”
We have an extensive programme of events, activities and services planned for the coming months.
See below or click here for the full diary of events and activities we have planned for 2016.
For events specifically aimed at parents please click here for the Events for parents 2016
“As adults and parents we struggle to come to terms with the loss of our little girl, but at least we have some life experience that from time to time we can draw upon for perspective. Our main wish for our son is that he continues to have a normal and enjoyable childhood. Clearly our lives have changed but we do not want his childhood to pay the cost and knowing we have this program to rely on and to keep a look out for him means a great deal to us.
The word ‘Always’ at the end of your tagline, really is a genuine promise and we are immensely grateful for it”- Shelley Duggan
Bereavement support offered before the death of a child:
At the point when you are given the devastating news that your child’s prognosis is terminal often lots of support is offered in the form of medical intervention. We have trained members of the team who can support you practically and emotionally through this difficult time. Support offered to your child could be:
- Play sessions tailored to the wishes and ability of your child
- End of life aromatherapy as an ancillary pain management for your child
- Assistance with filling in wish making applications
- Support in helping fill out an ACP to advocate for your child’s wishes
- Helping a family to articulate their views to family, friends and the wider support network
Butterfly support for siblings:
When grieving for your own loss it can be difficult to comprehend how to support your child/children through their own feelings of grief. We have trained members of staff who, through the use of age appropriate therapeutic activities, can create a safe space for your child to safely talk through their feelings. In addition we also offer:
- Support for siblings anticipating the loss of their brother or sister
- A youth driven remembrance day
- Assistance with getting the right care in place at school for bereaved siblings
One of our main aims is to create precious memories which will last a life-time. Below we hear from some of the families we have supported.
Michelle Taylor, a mother from Beaconsfield was introduced to the Trust through a family member in June 2011.
"As a small family with a beautiful four year old daughter that has MPS, Sebastian's Action Trust has played a huge helping and supportive part in our lives.
We are very fortunate to have taken part in the Crown & Tiara Walk and the Children's Miracle Mile, to raise as much funds as we can as our small way of showing our appreciation; and we look forward to helping more!
Instead of Christmas cards, our friends and family all donate too each year as every penny helps families who really need the Trust's help, from the smallest things like helping with hospital visits to a restful break at the Bluebells!
We count ourselves extremely lucky to attend special events such as the Christmas party, etc - it's so amazing seeing the huge smiles on all the children's faces, and also to catch up with the lovely friends we have made within the Trust".
At The Bluebells we have a Garden of Remembrance and Reflection where families can privately spend quiet time together. Each year, we host a Remembrance and Thanksgiving Day – a time for families to come together to celebrate the lives of their loved ones. Our families often help to shape the event with chosen readings and music, which has special significance to those mourning the loss of a child or young person.
To find out more about our bereavement support and advice, please e-mail email@example.com