There is practical support and help available in the UK for children with MAE and their families. Below is a list of useful contacts. Please note this list is not exhaustive.
Benefit Enquiry Line (BEL): 0800 88 22 00 –
This is a confidential telephone service (for people with disabilities and their carers) providing information and leaflets on benefits available.
Financial Help is available in the form of Disability Living Allowance and Carers Allowance.
To download the application forms go to the following web site:-
Text Phone 0800 24 33 55
There are forms to complete in order to receive the money and there are telephone numbers to contact to help you fill in the forms correctly to ensure that you receive the highest amount possible to help you care for your child.
Remember to photocopy the form before submitting it as you may need it later to appeal as sometimes applications initially get low allowances.
There is also help available from UK parents on the yahoo Doose Group who have completed these forms and can offer advice/help in completing the numerous sections. Experience from UK parents with these forms is that you really have to record the worst medical/behavioural problems that you have encountered with your child to ensure that you get the maximum allowance.
At the highest level this amounts to a substantial amount of money which could be used to pay for example childcare, domestic help around the house to make your job as a carer less stressful.
2. Voluntary Agencies in the UK
Below is a selection of voluntary agencies in the UK that can provide respite care for carers of children with severe illnesses/disabilities such as MAE.
§ Crossroads – Caring for Carers
This is a major national charity providing breaks for carers. It has over 200 schemes across England and Wales providing practical professional support to carers where they need it most: in the home. Crossroads considers that carers should be entitled to practical support to reduce the stress of caring. A trained care worker can visit your home usually for a few hours a week to take over the caring such as getting the children dressed or watching them whilst you get dressed or go shopping or have a sleep.
Tel: 01788 573653
Fax: 01788 565498
§ Princess Royal Trust for Carers
This is a national charity working to make life easier for carers to cope. The Trust provides information, support and practical help through its network of 115 Carers Centres. It believes that not carer should reach crisis point before getting the help they need.
Tel: 020 7480 7788
§ Carers and Work – Working Families
Working Families is a campaigning charity which helps working parents and carers and their employers find a better balance between responsibilities at home and work. It provides information and advice for employers and individual carers about how to resolve workplace issues. Free legal advice can be available via the helpline.
Helpline: 0800 013 0313
Tel: 020 72537243
§ Contact a family
“Every day over 75 children in the UK are born or diagnosed with a serious disability or rare syndrome and the vast majority of them are cared for at home. Contact a Family is the only UK charity providing support and advice to parents whatever the medical condition of their child.”
§ Matthew’s Friends
A parent led charity promoting the use of the ketogenic diet which many parents in the UK have found useful.
3. Epilepsy Nurses (Sapphire nurses)
The aims of the Sapphire Nurses are: to promote good practice and to act as a specialist resource in the diagnosis, treatment and care of people with epilepsy; to encourage the setting up of specialist epilepsy clinics in hospitals and GP practices; to participate in research into epilepsy.
Sapphire Nurses are also managing clinics, offering patients counselling, advice and discussion on the effect of their condition. Consultants are able to offer a wider service for their clients with epilepsy thanks to the support of Sapphire Nurses for example Sapphire Nurses can also do home visits to give practical advice on safety around the home and even loan video cameras to record your child’s seizures to aid correct diagnosis. They can also act as a mediator between parents and consultants for example if you have a query or problem then you can contact the Sapphire Nurse direct who will liaise with the consultant on your behalf.
At present there are 60 adult and paediatric (children’s) Sapphire Nurses working throughout the UK.
You can contact the Epilepsy Helpline for full details of your local Sapphire Nurse service on 0808 800 5050.
4. UK Shops and UK Websites
Luckily many supermarkets in the UK now stock many food products that are keto- friendly.
Tesco and Asda have a good range of oils – Macademia Nut Oil, Grapeseed, Olive Oil, and Walnut Oil. These supermarkets also sell double cream containing at least 47% fat or more.
Tesco and Asda also sell a good range of zero or trace carbohydrate flavoured drinks for children on the Ketogenic Diet which are great for treats.
Sainsbury’s also stock Keto friendly children’s toothpaste (Toms of Maine Silly Strawberry Flavour).
If you shop on-line with these supermarkets you can also search for the carbohydrate, protein and fat content of the food that you are purchasing - crucial when calculating recipes for the ketogenic diet.
For keto-friendly vitamins check out health food store Holland & Barrett which sell their own range of vitamins which are free from sugar, lactose, wheat, gluten, yeast, salt, preservatives and artificial colours and flavourings.
Shopping online is also useful for bulk purchases for example nuts or oils. One such store is Goodness Direct which sells organic produce, gluten free produce, dairy free produce in addition to Brazil nuts, Macademia nuts, oils, Biona cracked linseed (fantastic source of fibre for children on the ketogenic diet). Check out their web site
5. Pre-school Support
If you have any concerns regarding your pre-school child’s development due to the frequency of seizures, then contact your health visitor or consultant and request that your child is assessed by Pre-School Support.
The purpose of this service is for pre-school children who may later have special educational needs. Pre-school support will visit your child in their home surroundings and help you as the primary carer to understand the child’s needs and develop strategies that may be used to assist their development - often referred to as IEPs (Individual Education Plans) to help you to monitor your child’s progress in specific areas.
Pre-school Support will also assist parents through transition into nursery and school -liaising with nursery and school to ensure the correct medical and learning support is in place for your child. This service is invaluable if your child requires additional support at nursery or school such as Medical Hours or a Learning Support Assistant.
Check out nurseries/pre-schools/schools that that can accommodate children with severe epilepsy. Many Local Education Authority nurseries have staff trained to deal with children with special needs and allocate a number of places every year for children with disabilities including epilepsy.
Ofsted’s web site is a good place to start as they provide reports for state sector nurseries/schools, independent schools and special schools.
7. Teachernet has lots of resources for finding out about special needs / statementing etc for your child at school.
8. Educating your caregiver
§ Epilepsy Action (www.epilepsy.org.uk) is a UK based Charity which provides information and advice for people with Epilepsy. As well as campaigning to improve epilepsy services and raise awareness of the condition, they offer assistance to people in a number of ways including a national network of branches, accredited volunteers, regular regional conferences and free phone and email helplines.
Their website contains lots of informative leaflets, books, information packs and videos that are available to educate your child's nursery/pre-school, school, friends etc. They also provide on-line newsletters containing the latest medical developments, links to medical research documents and stories in the newspapers, radio and TV regarding Epilepsy plus much more.
BEA-Connect is Epilepsy Action’s Online Community for people with epilepsy or their carers who wish to chat to others in the same position.
This is really a fantastic resource and was many UK parents starting point after their children were first diagnosed with Epilepsy.
§ Ketopag in the UK http://www.ketopag.org/documents.htm provides a simple information sheet that you can give to carers which explains the Ketogenic Diet in a very readable easy format. This document is particularly useful for teachers/carers as they can use the sheet to explain to the other children why a child on the Ketogenic Diet cannot eat sweets, crisp etc.
9. Alternative Therapies
Don’t assume that your consultant will give you ALL of the available treatment options.
In addition to conventional medically prescribed treatment options available to treat MAE there are also many complementary therapies which can work alongside conventional treatments and these are widely available in the UK.
One such alternative treatment is Cranial Osteopathy which many parents believe has been helpful to their children with MAE.
Cranial Osteopathy is a diagnostic and healing approach based on the application of corrective pressures to the cranium and spine. Cranio-sacral therapy is the osteopathic treatment of the head, in which osteopathic techniques are used to deal with the bones and the very narrow joint spaces. This is a very gentle and non invasive therapy which can be very effective. The gentle pressure applied around the skull plates encourages the circulation of the cerebrospinal fluid and deeper energies. The therapy works by allowing the body to heal itself, by bathing tissues and allowing blood and fluid to flow more effectively.
The UK organisation for Cranial Osteopathy provides a list of fully qualified osteopaths registered with the General Osteopathic Council. To find an Osteopath in your area go to the following web site:-
Parents have also found Aromatherapy useful:
www.matthewsfriends.org this site like the Charlie Foundation provides wonder information on the Ketogenic Diet.
www.epilepsy.org.uk this organization provides all kinds of information on living with Epilepsy. There is also a wonderful tab on how to provide the correct information for healthcare providers. This site is a treasure trove of information for people living the UK.
www.youngepilepsy.org.uk this site is dedicated to children with epilepsy. They work with at least one school to provide services etc . This site is full of information for parents and caregivers of children with epilepsy.
www.cafamily.org.uk this site is for families with disabled children. It helps with applying for disability benefits, special education schooling and a whole host of other things. The best thing about this site is that it can and will put you contact with other families that have children with the same disability as your child.
www.epilepsysociety.org.uk this seems to be the oldest charitable organization for Epilepsy in the UK. It is also a good source of information. Seems to be the best place to go if you want to find a neurologist/epileptologist .