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 as a self-referral please fill in our family referral form here.
If you are a professional wishing to refer a family, please fill in our referral form here.
"Not only has the trust provided us with a welcoming, safe and relaxing place to spend time together as a family but they have introduced us to many families in a similar situation - a true family of families." - Faye Southwell
Henry, now four, suffers with Koolen de Vries and Hurlers syndromes meaning he requires 24 hour care. The mainstream mother and baby groups Faye attended with Henry did not cater for their needs, and Faye found herself somewhat isolated when other mums were comparing the developmental milestones their children were achieving.
Having been told about the Trust by another parent, Faye soon became a regular visitor to The Bluebells, enjoying the pool, which is perfect for Henry’s needs, and day visits with friends. Faye has developed a good network of friends since becoming a service user, and sees them regularly at Trust organised events such as chill and chats, pamper days and sleepovers. It gives her an opportunity to let her hair down and have a break from the rigours of providing constant care to her son.
Henry also enjoys Trust activities and is starting to recognise friends who he sees both at school and at The Bluebells. They enjoy family activities together such as the Christmas in July party, Easter Egg hunt and other activity days the Trust puts on throughout the year – all in a safe, specially adapted environment.
Faye’s outreach worker, Carla, provides practical support, accompanying her and Henry on their frequent train visits to Great Ormond Street Hospital. Henry is not comfortable on long car journeys, so the assistance on the train and getting across London with his wheelchair is invaluable. Carla has also accompanied Faye and Henry on days out –for example a trip to Marwell Zoo – providing an extra pair of hands.
Faye has also had financial support from the Trust, and with assistance from a Finance Support Worker managed to obtain funding for a P-Pod, a supportive bean bag with harness meaning Henry is able to sit in comfort at home. This would normally cost around £700 so without the funding, the family would struggle to afford this equipment – the Trust’s support and knowledge of the application process helped make this possible.
"It has been brilliant what the Trust have done for me. It’s fun enjoyable and friendly. It’s great doing something different that I normally wouldn’t have the chance to do." – Reece Wardle
The Wardle family were first referred to the Trust in 2013, not long after Reece was diagnosed with Severe Aplastic Anaemia at the age of eight. Now 12, Reece recently underwent a bone marrow transplant. This has meant Reece, and mum Cathy, spending weeks in hospital, missing out on some of the things that many children take for granted.
Sebastian’s Action Trust offers support to the entire family, not just the child. Following Reece’s diagnosis, single mum of four Cathy gave up her job in order to care for him. This caused her to fall behind with rent arrears and the family faced possible eviction from their home. The family’s outreach worker accompanied Cathy to the rent office and helped negotiate an agreement. This support helped alleviate some of the pressure the family was under.
Reece has been able to enjoy a number of events and activity days organised by the Trust. He enjoys visiting the Hub and has attended sleepovers, music and cookery workshops, and a trip to Farnborough Air Show. These events enable Reece to have fun and make friends, but they also give Cathy an opportunity for a break.
The Trust has also put in place a buddy for Reece – a positive older male role model, which he has found helpful. “He did whatever I wanted to do. He played pool with me and helped me control my anger.”
Sebastian’s Action Trust also supports siblings, who have plenty of opportunities to get involved.
When pop star Ella Henderson visited our Slough Hub in 2015 as part of her involvement in Comic Relief, Reece’s older sister, Danielle, had the opportunity to meet her. Ella is the same age as Danielle and was moved by her family’s story and how the Trust helped plan the family budget and how Danielle had to temporarily leave college in order to earn money to help with the household’s cash flow. Despite Ella’s busy life touring and recording albums she still messages Danielle now and then to keep in touch, and they follow each other on social media.
Brother Josh has also been supported by the Trust with assistance completing applications for apprenticeships.
The Trust has been able to assist the Wardles with practical support and advice on financial matters. However, giving Reece the opportunity to simply have fun and enjoy a childhood, despite his condition, has been the most rewarding part of the Trust’s involvement with the family.
Cathy comments ‘The support we have had from the Trust has been fantastic. They are there for the whole family, not just the kids.’ Agreeing, with Cathy, Danielle describes the Trust as a ‘family support system’.
"I never thought to get help. I’m Enzo’s Mum, he’s my child, and this is our normal life." – Caroline Thompson
Caroline and her husband Dan were first introduced to Sebastian’s Action Trust in August 2015. Dan, who is in the RAF, had been posted to the Falklands for 6months, leaving Caroline at home with Enzo who was 2 at the time and Luca who was only a few months old. Enzo, who is now 4 years old, has Cerebal Palsy, meaning he requires a lot of Mum Caroline’s time and attention.
For any family with a child with complex needs, the demand on time and attention is greatly increased. However, when one parent is in the RAF, this can put a lot of stress and pressure on the parent that stays at home. With Dan being in the RAF, Caroline is left at home alone to cope with the two boys. “Dan can be away a lot – anywhere from 4 weeks to 6 months at a time” explains Caroline, “Both the boys need and require a lot of my time and attention and it is very difficult.”
One area that is made harder having both the boys are hospital appointments for Enzo, as Enzo is wheelchair bound. At the appointments, he often has to be taken out of the wheelchair. “When Luca was born, it was hard enough with him as a baby as I had to carry him as well as push Enzo in his chair. But at least I could leave him in his seat whilst I got Enzo out of his wheelchair and did everything needed in the appointment. Now Luca can walk, it’s hard to keep him occupied during the appointments.”
The Trust assigned an Outreach Worker to the family. Carla goes with Caroline to any appointments that Dan is away for and helps to keep Luca occupied. She also visits the family at home and helps out where she can there. “Bath times can be tricky, so Carla is a great help occupying Luca whilst I bathe Enzo and vice versa. I can only bathe Enzo when someone else is here, otherwise he just gets a sponge bath. It’s too difficult.”
Trying to stay on top of ‘normal’ tasks can also prove tough. This is where the Outreach Workers help the families they support practically. “When Carla comes to visit whilst Enzo is at nursery, she watches Luca for me whilst I do chores round the house and one morning I managed to have a bath – in peace! A rare treat!”
Both Caroline and Dan’s families live too far away to help regularly and all of Caroline’s friends on the base have their own children to cope with, leaving Caroline to do everything on her own. “Friends try and help and they are there if I need a chat. But it’s often the practical help I need most.”
For the Thompson family, getting help from the Trust has made a huge impact on their lives. Now they have the help of an Outreach Worker, access to the facilities at The Bluebells and all the events, the help has been life-changing for Caroline. “Everyone is so helpful! Sebastian’s Action Trust is understanding. There is clear acceptance by everyone involved – the staff and other families. I now have somewhere to reach out for support when I need it.
"I don’t normally have someone to play with unless I have friends over, which can be hard at times. I love it when Tracy comes over – she is so much fun, she is awesome! She’s so active and we have a lot of fun!" – Orla McCarthy
When a child is diagnosed with a life-limiting condition, it impacts the whole family, including siblings. This was the case for the Angela and Patrick McCarthy, whose daughter Martha, aged 10, has a rare Chromosome Abnormality called Microdeletion 16P13.11. This causes developmental delay, microcephaly, epilepsy, short stature, facial dysmorphism and behavioural problems. All of Martha’s care takes a lot of Angela’s time, which not only impacts on normal family life, but also has a huge impact on Martha’s younger sister Orla, aged seven.
Parents of children with complex needs do a lot of juggling and ever-increasing feelings of guilt over not spending as much time with any siblings. Trying to give Orla time, attention and a ‘normal’ life is an added strain on Angela when she is caring for Martha.
When the family were put in touch with Sebastian’s Action Trust, the Sibling Support service was a ray of light for Angela. “Orla often asks me ‘when is someone going to play with me?’, and I don’t often have an answer and feel so guilty that I can’t spend as much time with her.” says Angela. “Having the Sibling Support service helps me feel less guilty. There is someone that can come and spend quality time with Orla and make her feel special. It is time dedicated just to Orla, which is wonderful.”
The overall impact of Sebastian’s Action Trust has had such a huge effect on the McCarthys. “It is like having an extended family, there is always someone you can call on.” says Angela. “There is such a great network of families with knowledge of forms and the systems. The events that the Trust put on are also fantastic. The Bluebells is home from home. I can dry my hair and not be judged!”
Family events in a safe environment give the McCarthys the space to spend time together as any other family would, to spend with both their daughters and for Orla to feel included. Angela goes on to say: “There are many different activities that as a family we wouldn’t have otherwise done, but we can now because The Bluebells is a familiar place.”
For Orla, the annual Easter Egg Hunt is “the most fun because you get to hunt Easter eggs!” As for The Bluebells, Orla says “The crazy golf is the best thing about The Bluebells.”
The Trust has been able to offer the McCarthys a range of services but the Sibling Support has proved to be the most critical. It has given Orla some normality, someone to play with and reduced Angela’s feelings of guilt.
Orla finished off by saying “For me, the people are what makes it the most fun!”
We would like to share with you some of our families’ stories:
The Thompson’s Story
When one parent is away a lot for work, the pressure of increased demand on time and attention is put on the other parent, making hospital appointments and day to day routines a lot harder. Read more
The McCarthy's Story
The impact on the whole family can be tough following a life-limiting or terminal diagnosis of a child, with the siblings often receiving less attention and feeling left out. Read more
The Wardle's Story
Following a life-changing diagnosis, even close knit family units need an extra support system to help them through their journey. Read more
The Southwell’s Story
Coping with a child with complex needs can be isolating for all the family, as well as difficult to manage days out and hospital appointments 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 as a self-referral please fill in our family referral form here.
If you are a professional wishing to refer a family, please fill in our referral form here.
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 email@example.com
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”.
“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 2017.
For events specifically aimed at parents please click here for the Events for Parents 2017
“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 firstname.lastname@example.org
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. 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 Amy Samuel on 01344 622500.
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.
A place for love, laughter, memory making and relaxation.
We aim to annually deliver 100 family respite breaks, 40 crisis breaks and 500 family day visits at The Bluebells.
We understand that a young person’s illness or disability can impact on family life in many ways, so we have created a place to relax, recharge and have fun, allowing time for each other away from the stresses of daily life.
The Bluebells, in North Waltham, Hampshire, is the UK’s only purpose built facility offering specialist breaks exclusively to the families of seriously-ill children and where possible, to those who are recently bereaved.
We offer privacy, space and a chance to escape from the rollercoaster of life, enabling families to heal through enjoying precious time together. We can accommodate two families in residence at a time, each occupying their own four bedroom, three bathroom apartment, whilst sharing the leisure facilities which include; an indoor hydrotherapy spa pool, sensory room, cinema, art suite, music room, games room, sensory garden, mini golf course, adventure play area and three acres of open space.
Day visits are also available, whether to take advantage of our provision of music, art and wellbeing therapies or simply to access some of the fantastic leisure and therapeutic facilities we offer.
The Bluebells visual tour
How to apply
Time at The Bluebells is available to the families of young people who meet our criteria from all over the UK. Holidays at The Bluebells will generally run from Friday until the following Tuesday and are free, although a voluntary contribution of £100 per family is welcomed. Bookings will be honoured on a first come, first served basis (when considered against our eligibility criteria) following completion of our application form and verification of your child's condition and needs by your child's physician. We do, however, retain the discretion to waive the contribution or help to find appropriate funding where needed, and would always work to make a break at The Bluebells possible for every family meeting our criteria.
To apply, please complete the booking form below. If you have any questions, some answers can be found on our FAQ's page here or for any further questions & queries, please contact Lauren Harris: Bluebells@sebastiansactiontrust.org