FlexiGrant 1

Image shows a young boy who has SMA using a hoist with a PA assisting him.

These grants are to help with the costs of accessing NHS-funded treatment or assessment.

What will we fund?

People often have to travel to one of the Regional Neuromuscular Centres (RNMCs) for NHS-funded:

disease -modifying drug treatment
sleep studies
spinal management
other assessments and care

Treatment with the disease -modifying drug Zolgensma only takes place at one of six specialist centres in the UK.

Your referring NHS Trust and the treating or assessing NHS Trust should always discuss and advise you what travel and accommodation costs they will provide.

FlexiGrant 1 may cover other unavoidable costs such as:

Additional travel costs
Additional accommodation costs
Other costs due to being away from home e.g. meals, childcare costs for siblings, pet care.

How much can I apply for?

A maximum grant of £500 may be made every year.

We do not means-test, but we do ask everyone to keep in mind that these funds are limited.

If your application is for more than £500, we will work with you to try to get all the funding you need. In some very exceptional circumstances, we may increase the upper limit.

Who can apply?

Applications may be completed by:

Parents of children who have SMA
Adults living with SMA
Health Professionals on behalf of an individual.

Before applying, please read through the Frequently Asked Questions (FAQs) >

FlexiGrant 1

1. Who is making this application? Please complete this section if you are a health professional.

Name

First

Last

Job title

Phone

Enter Email

Confirm Email

Referring person / centre / provider

2. Please complete this section about the adult with SMA, or child/young person who has SMA

Name

First

Last

Date of birth

For adult applicants only

Address

Street Address

Address Line 2

City

County / State / Region

ZIP / Postal Code

Enter Email

Confirm Email

Phone

Usual specialist neuromuscular centre

3. If applying on behalf of a child, about the parent / guardian making the application

Parent/Guardian

First

Last

Address

Street Address

Address Line 2

City

County / State / Region

ZIP / Postal Code

Enter Email

Confirm Email

Phone

4. About the treatment / assessment being sought

What is it?(Required)

Where will the assessment be?(Required)

What date will the person who has SMA attend?(Required)

Who needs to go with them?(Required)

5. What financial help is needed to access this assessment / treatment? Please briefly outline how you travelled to your appointment. (For mileage, state the number of miles travelled to and from )

Mileage: (including start and end post codes)

Number of journeys:

Parking fees:

Public tansport costs:

Taxi fares:

Additional accommodation costs

Please briefly outline what accommodation is needed including what, if any, is being provided via the Centre / hospital, and for whom. Please state clearly what financial help is needed to meet these costs.

Other costs. Please briefly outline want other costs will be incurred as result of this assessment / treatment. Please state clearly what financial help is needed to meet these costs.

Application documents

Please ensure that at least 3 of the set criteria are met – and explained in the application.(Required)

All other possible funding avenues through NHS Trusts have been tried.

Funding is required due to the additional cost of having a disability.

Speed of response is critical.

Funding will alleviate immediate hardship.

Funding this will make a significant difference to quality of life.

Official letter of diagnosis for SMA(Required)

Max. file size: 128 MB.

Date(Required)

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