A new Juvenile Batten Disease Outreach Service
Juvenile Batten Disease (JBD) is a rare, life limiting disease. We have world leading expertise in caring for these young people with 16 beds at our unique nursing home. Around 60 people in the UK have this diagnosis. We want to reach out to these families to give the best possible outreach service.
We aim to have the new Outreach Liaison Nurse in post by April 2018 and to hold the first clinic in October 2018. The project will be ongoing.
Charity information: SeeAbility (The Royal School for the Blind)
Individuals with JBD have to cope with this rare, life limiting disease for years after diagnosis. Although healthy at birth, from 5-8 years old problems with vision start, then seizures & mobility & speech fall away before an early death. They will experience numerous hospital appointments, often with professionals who have never encountered the disease before and so are not aware of the most effective treatments or equipment to support the individual. The strain on the whole family is immense
Our Outreach Liaison Nurse will support families with advice, training & sign posting. The outreach clinic, held 4 times a year at our specialist centre, will co-ordinate a team of skilled clinicians & professionals who understand JBD. Results will be: better outcomes for symptom control, an enhanced quality of life for the individual and support for families to learn to manage the most distressing symptoms. We will create a “one stop” hub and reduce the need to attend hospital clinics.
To share our expertise with more people with JBD so that they can enjoy a better quality of life.
Activities» Recruit a new Outreach Liaison Nurse to give advice, training and sign posting.
To make contact with all people with JBD in year 1 of the project to offer support.
To enable a more informed approach to healthcare for JBD
Activities» Hold a 5 day clinic at SeeAbility's Heather House, 4 times a year.
» Provide education, training & support to families & carers within the clinic along with person centred support plans to use at home and school.
To reach up to 40 people and their families at the clinic over 12 months.
To improve knowledge of symptom diagnosis and treatment of JBD.
Activities» Communicate recommendations for treatment to local clinicians and healthcare professionals for them to implement
Initial and subsequent reviews of individuals with JBD which evidence improvements in symptom diagnosis and treatment and a reduction in hospital admissions.
Individuals with JBD will enjoy healthier lives and families will feel supported to cope with this traumatic condition. Vitally, knowledge of symptoms and treatment options will deepen as more people with JBD are assessed by experts in this condition. This will enable a more consistent approach to treatment. There will be a reduction in hospital admissions for these individuals. Success will be when all people in the UK with a diagnosis of JBD can receive outreach support from SeeAbility.
We will need support from the Hampshire Hospitals NHS Foundation Trust and would like to work in partnership with the Batten Disease Family Association. SeeAbility is liaising with these organisations.
There is a risk that we could fail to raise the necessary voluntary income to fund this new JBD outreach clinic. We are investing in fundraising and have strengthened our Trustee Board with fundraising expertise to reduce this risk.
Supporters will receive regular updates with significant findings and case studies. For key major donors, it may be possible to arrange a visit SeeAbility’s Heather House or to meet with a member of the project team.
Budget - Project Cost: £84,154Loading graph....
Amount Heading Description £32,448 New Outreach Liaison Nurse To reach out to more people with JBD £19,026 Staff time to support clinics Holding a 5 day clinic, 4 times a year £2,880 IT equipment & postage Mobile, laptop, tablet for Nurse & clinic £17,000 Travel costs Nurse, families, consultants £12,800 Accomodation & catering For families attending clinics
SeeAbility’s Heather House is a residential nursing service which was designed and built specifically to support 16 young adults with JBD. It opened in 1999.
Based in Tadley, Hampshire, we have a large day service where clinics will be held. We also have guest accommodation for up to two families.
SeeAbility's Outreach Liaison Nurse will provide support to young people with JBD, with flexibility to visit them at their family home.
Children & adults with JBD: On average people supported at SeeAbility’s service live 3-4 years longer with JBD. Medicine and support programmes will be based on sound rationales, enabling individuals to be the person they are able to be.
Parents, teachers and carers: from understanding how JBD affects the individual and how best to support the person.
The NHS and hospital outpatient clinics: this service will be a more efficient and effective model, reducing long term costs to the NHS.
SeeAbility has world leading expertise in JBD. At Heather House we have supported 28 younger adults with this rare and devastating disease since 1999. 9 people are currently enjoying their lives with us. 19 have lived and died here, providing a lasting legacy of the knowledge, skills and passion which we use daily to face the ‘battle with Batten’ head on and hand-in-hand with them and their remarkable families.
Read more about the Charity running this project.
Registered Manager at SeeAbility's Heather House since the service opened in 1999
will fund a day of specialist support in SeeAbility's multi-therapy outreach clinic for 1 family
We are so thankful for the expertise and loving care shown to both our daughters who developed Juvenile Batten Disease. SeeAbility has made such a difference to all our lives.