Welcome to the Hope for Hermione Community Support page. We understand that a diagnosis of Beta-propeller Protein-associated Neurodegeneration (BPAN) can be overwhelming, and families often face challenges in accessing the right support. This page is designed to provide clear guidance on managing symptoms, accessing therapies, and finding the right services within the UK to help your child thrive.

Receiving a BPAN Diagnosis

In the UK, a diagnosis of BPAN is confirmed through whole genome sequencing (WGS) or whole exome sequencing (WES). These genetic tests can take several months to process, with some results taking up to six months or longer to return. If you are waiting for results, your paediatrician or geneticist should be your primary point of contact for updates and further information.

If you are experiencing delays or need additional support while waiting for results, you can contact PALS (Patient Advice and Liaison Service) at your local hospital. PALS provides free and confidential advice on NHS services and can help resolve concerns about your child’s care. You can find contact details for PALS on your hospital’s website or by asking at the main reception.

Managing BPAN Symptoms

BPAN affects each individual differently, and managing symptoms often requires a multi-disciplinary approach. There are various services available on the NHS and through local authorities that can support your child’s development and well-being, including:

• Physiotherapy – to support movement and motor skills
• Occupational Therapy – to aid with daily living skills and adaptive equipment
• Speech and Language Therapy (SaLT) – to assist with communication and swallowing difficulties
• Continence Support – for help managing bladder and bowel needs

For continence support, your GP, health visitor, or paediatrician can refer you to your local NHS Bladder and Bowel Service (Continence Service). Some areas also allow self-referral, so check with your local NHS trust. You may be able to access support such as continence products (nappies, pads, bed protection), toileting advice, and specialist assessments.

How can I help my child to communicate?

• Makaton is a great way to help children to communicate if this is appropriate.  ‘More than Words’ is charity that offers courses to parents and carers whose children have communication difficulties.  This has helped Hermione to communicate her needs as well as help her to gain the confidence to ‘speak’ to us in a way that she is comfortable.  Hermione has become familiar with various signs and in particular has loved learning makaton through singing.  ‘Singing hands’ has saved us on many occasions, and it has even become difficult for us as adults to sing Katy Perry’s Firework without signing.
• Communication books are also a great way to help children communicate.  Please do speak to us if you need support on how to start this.  You can also speak to your speech and language therapist or your child’s school on what would be the best way to support your child.

Respite and Short Breaks for Families

A "front door" referral is the first step in accessing support from the disability social services team in the UK. This referral can be made by the individual in need, a family member, a carer, or a professional such as a GP or teacher.

To begin the process, you should contact your local council’s social services department, either online, by phone, or in person. You will need to provide details about the individual's needs, their disability or condition, and any current support they receive. The council will then assess the request and may arrange a needs assessment to determine the level of care and assistance required. This could include support with daily living, mobility aids, respite care, or other tailored services. If eligible, a care plan will be developed, and appropriate support put in place. More information, including how to find your local authority’s contact details, is available at www.gov.uk/find-local-council.

Caring for a child with BPAN can be demanding, and having access to respite services is essential for both the child and their family. There are several options available in the UK, including:

• Local Authority Short Breaks Services – Your local council may offer overnight respite, day care, or activitiesfor disabled children. Contact your local Children with Disabilities Social Care Team to request an assessment.
• Family-based Respite Care – Some charities and local services provide trained carers to support children in their own homes or at designated centres.
• Hospice and Palliative Care Services – Organisations such as Together for Short Lives and Children’s Hospices Across Scotland (CHAS) offer respite, palliative care, and family support.
• Specialist Charities and Organisations:
  • Contact – Provides information and advice on respite care and short breaks for families with disabled children.
  • Barnardo’s Short Breaks – Offers local respite services, activities, and care for disabled children.
  • Sense – Supports children with complex needs, including offering short breaks and respite care.
  • Newlife the Charity for Disabled Children – Helps with funding for specialist equipment and provides emergency respite support in some cases.

Financial Support and Grants

Caring for a child with BPAN can come with additional costs, especially when specialist equipment or home adaptations are needed. Several grants are available in the UK to help families:

• Disabled Facilities Grant (DFG) – A government-funded grant to help with home adaptations such as wheelchair-accessible bathrooms, ramps, hoists, and stairlifts. This is means-tested and provided by your local council.
• Family Fund – Offers grants for specialist equipment, home adaptations, sensory toys, and essential household items for families on low incomes.
• Newlife the Charity for Disabled Children – Provides grants for specialist equipment such as adaptive seating, beds, buggies, and car seats.
• Caudwell Children – Offers funding for specialist equipment, therapy, and sensory support.
• Turn2us – A charity that helps families find grants and financial support based on their individual circumstances.

Your occupational therapist, social worker, or GP can help you apply for these grants. Many charities also allow families to apply directly online.

Education and Social Care Support

For children with BPAN, an Education, Health and Care Plan (EHCP) can provide tailored support at school. To request an EHCP assessment, you can contact your local authority’s SEND (Special Educational Needs and Disabilities) department directly. Schools and nurseries can also initiate this process on your behalf.

Additionally, your child may be eligible for disability social care support, which can provide assistance such as short breaks, respite care, and equipment funding. Your local council’s Children with Disabilities Social Care Team can assess your child’s needs and advise on available services.

Accessing Therapies

Accessing therapy through the NHS will start off with an assessment. Many practitioners will not have heard of BPAN, so they may need time with you to discuss. It's really important that you are open and honest about your child's struggles.

You may want to ask what therapy is recommended, how many sessions, who will provide this and where will sessions take place. Often the strategies and resources are school based. Also ask if they have recommendations for you at home.

The assessment will dictate how much direct intervention the child would benefit from and what resources and strategies may be helpful at home and school. This information will all be documented in a report. 

We encourage you to share reports with other doctors and professionals who are part of your child's team. It is also a good idea to share a copy with the school. 

Reports should be added as evidence when applying for or updating an EHCP.

Record Keeping (Information Hub)

I have personally found it  helpful to have reports saved electronically on email or on a cloud so that you have them on hand at anytime. I found sorting each area of need Hermione has into its own folder with all the letters from her appointments into a folder.  I also created a document that I have on hand so that when we have see new practitioners, I always have this information to hand.  It also comes in handy when you are traveling and need to access information at a moments notice without having to carry around hundreds of doctor’s notes around.  You also never know if you need to access medical treatment when abroad, and this information can easily translated instantly.

Included in this ‘Information Hub’, I have included the names of all the medication that Hermione is on and her doses, the names of her doctors, and all her personal information that I know I would need.

Blue Badges

To apply for a Blue Badge in the UK, you can do so online through the official government website or by contacting your local council. You will need to provide personal details, proof of identity, proof of address, and evidence of your eligibility, such as medical documents or benefit entitlement letters. If you qualify automatically, for example, by receiving the higher rate of the mobility component of Disability Living Allowance (DLA) or certain levels of Personal Independence Payment (PIP), your application process may be quicker. If you do not qualify automatically, you may need to provide additional evidence about your mobility difficulties. The application fee varies depending on the region, with costs of up to £10 in England, up to £20 in Scotland, and free in Wales. Once submitted, applications are assessed by the local authority, and you may be asked for further information or an independent mobility assessment. If approved, your Blue Badge will typically be valid for three years. You can apply or find more details at www.gov.uk/apply-blue-badge.

Disability Living Allowance (DLA)

Disability Living Allowance (DLA) is a benefit available for children under 16 in the UK who have additional care or mobility needs due to a disability or health condition. To apply, you need to complete a DLA claim form, which can be obtained online from the government website or by calling the Disability Living Allowance helpline. The application requires detailed information about the child’s condition, how it affects their daily life, and any extra care or supervision they need compared to a child of the same age without a disability. Supporting medical evidence from a doctor, therapist, or other healthcare professional can strengthen the application. Once submitted, the Department for Work and Pensions (DWP) will assess the claim, which may take several weeks. If approved, DLA is paid at different rates depending on the level of care and mobility needs. More information and application forms can be found at www.gov.uk/disability-living-allowance-children.

Further Support and Advice

If you need further guidance, our Hope for Hermione team can help signpost you to appropriate services and organisations specialising in BPAN support. We are here to connect families, provide information, and advocate for better care.

Please note that the information on this page is specific to the UK, and services may vary depending on your location. If you are unsure where to start, speaking with your GP, paediatrician, or a local disability support charity can help.

For more information, resources, and community support, please explore our website or contact us directly. You are not alone—we are here to support you and your family every step of the way.