Resources & Support

After Diagnosis

Practical Help

Support Group

Disability Benefits

After Diagnosis

Once diagnosed, most people will be further referred to see a neuropsychologist or a neuro-physiotherapist.

Currently, globally, FND is classified as psychiatry but many doctors who are specialists in FND, along with ourselves & other FND charities are fighting to classify it jointly with neurology.

Please don’t feel you are being told this is a mental health problem. A neuropsychologist can teach you techniques to manage your condition more effectively or things to put in place should you have a flare up.

Some find that Cognitive Behaviour Therapy (CBT), Neuro Linguistic Programming (NLP), SLT (Speech & Language Therapy), meditation, mindfulness, etc… helps.

Some with movement disorders such as dystonia & tremor find mirror therapies useful.

Occupational Therapists (OTs) can help with equipment to make life easier both in the home & outdoors.

Hyperbaric oxygen therapy, pilates, hydrotherapy pools & gentle yoga has been known to help but these are rarely available on the NHS.

A referral to orthotics may help if you have problems with feet turning etc. preventing you from being able to stand or walk on them. They may issue custom made shoe inserts or something like a foot/leg splint.

Practical Help

There is a wealth of practical help available, if you know where to look. We are constantly updating our website to provide information about help and support for those who have received a FND diagnosis.

Social care team

You can be referred to the Social Care team at their local council, so that you can be assessed for direct payments to help pay for carers and a PA (Personal Assistant) if required. You can do a self-referral instead of through the GP and if you if have an unpaid carer (ie family member or friend), they can ask for a Carers Assessment at the same time. There is financial assistance available from the OTs (Occupational Therapists) attached to your local authority Social Care team, to help with house adaptations (although the Disabled Facilities Grant is means tested). If you are living in Social Housing, they also have a budget available for helping disabled tenants with adaptations and maintenance, so it is always worth enquiring with them too.

Council tax reductions

Council Tax Reductions are available for those who use a wheelchair within the home, and the person affected by FND may apply for PIP, ESA, Universal Credit and other benefits. Carers Allowance is a benefit that carers may be able to claim. If you are on some of the above benefits, you may be entitled to Council Tax Reduction and Housing Benefit if you are in rented accommodation. There are rules surrounding all these benefits these so you would need to check current eligibility.

A paper on how to fill out the PIP application is available to members free of charge.

Wheel chairs

If you need a wheelchair, occasionally they are available through the NHS though most people have to buy their own. Through The British Red Cross, you can hire a wheelchair for up to 20 weeks. You can get an electric wheelchair through the PIP Motibility Scheme or may be able to apply for a grant to cover the cost. If you google disability equipment grants, there are a few different organisations you can apply through.

Disability blue badge

If you have trouble with mobilising, whether you are in a wheelchair, use an aid, are able to walk but not far due to pain, fatigue, weakness, balance problems or are likely to suffer a loss of consciousness and face difficulties afterwards, please apply for a Blue Badge. This is done through your local council. DO NOT do it through a third party. You do not have to be in receipt of the mobility aspect of PIP or DLA but if you don’t, you may need to include hospital letters or a letter from the GP to support your application. Eligibility seems to vary between local councils but it is always worth a try and an appeal if your application is rejected.

Public transport

If you are unable to drive and need to use public transport, a Disabled Bus Pass can be applied for through your local council. Again, local councils vary with eligibility but you should always try and appeal if turned down. This pass will entitle you to free transport on buses. If you are away from home, most bus companies and other councils accept these bus passes too, even if you are from a different local authority.

A Disabled Railway Pass is also available and entitles you to fare discounts. We also sell “ Disabled, please offer me your seat” badges at a suggested donation of £2 per badge plus P&P.

Advice on PIP applications is available free of charge on the .gov.uk website:

www.gov.uk/pip

Facebook Support Group

FND FrieNDs has a Facebook support group for those living with a diagnosis of FND within the Southwest. The group aims to help reduce the feeling of loneliness, misunderstanding and isolation and provide a place to share thoughts and offer support and encouragement. The page is not run by medical professionals so all medical advice should be sought from your medical provider. We look forward to meeting you!

Join our Facebook Group

FND FrieNDs provide support and information for people with an FND diagnosis and their families and carers. Explore our interactive map to search for FND groups, representatives, events, medical services and research institutions.

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