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 access our services we will need a referral form. Details of the referral process can be found below.
Medical professional referral
Step 1: Please fill in a medical professional referral form. As part of your referral you will be required to confirm that the child has a life-threatening or life-limiting condition in accordance with the NICE guidelines which are specified on the referral form. Additionally you will have also obtained consent from the family that they would like to access our service. The form can be accessed here.
Step 2: Submit referral to email@example.com. A confirmation e-mail will be send to you to confirm that the family will be contacted by their allocated outreach worker. The assigned outreach worker will make contact within 7 working days of receipt of the referral to arrange an initial visit and assessment at the families’ earliest convenience
Step 1: Please fill in a professional referral form. As part of your referral you will be required to provide details of a medical professional involved with the family so that they can confirm the child has a life-threatening or life-limiting condition in accordance with the NICE guidelines which are specified on the referral form. Additionally, you will have also obtained consent from the family that they would like to access our service. The form can be accessed here.
Step 2: Submit referral to firstname.lastname@example.org. A confirmation e-mail will be send to you to confirm that the medical professional will be contacted.
Step 3: Medical Professional contacted. If the criteria is not met, an email will be sent to you to confirm this. If the criteria is met, then you will be emailed to confirm that the family will be contacted by their allocated outreach worker. The assigned outreach worker will make contact within 7 working days of receipt of the referral to arrange an initial visit and assessment at families’ earliest convenience
Self – referral
Step 1: Submit referral to email@example.com. You will need to give consent that your medical professional can be contacted. A confirmation e-mail will be sent to you to confirm receipt of referral. The form can be found here.
Step 2: Medical Professional contacted. If the criteria are not met, an email will be sent to you to confirm this and you will be signposted to other services that may be more suitable for your needs. If the criteria are met, then you will be emailed to confirm that you will be contacted by your allocated outreach worker. The assigned outreach worker will make contact within 7 working days of receipt of the referral to arrange an initial visit and assessment at your earliest convenience
The Wardle Story
"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’.
The Southwell’s Story
"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.
The Thompson’s Story
"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.