I don't know which hospital is reckoned to be the best, but DD was under Gt Ormond St - we live North of the river. I have come across the Evelina hospital and Kings College hospital for children, who live South of the river.
GOSH do not take over DC's care lock, stock and barrel - they expect DC to be under the care of their local hospital, so that they know about DC rather than find out about them, the first time DC appears at A & E! GOSH puts as much care back onto "the local team" as they can. However, if brain surgery is an option, the GOSH epilepsy department will consider it.
I would look for a local hospital with either a consultant paediatrician with expertise in epilepsy, or a consultant paediatric neurologist; and a paediatric epilepsy nurse. The epilepsy nurse is often the person, who gives most advice on how to manage epilepsy, beyond prescribing the drugs; or what to do if a change of drugs is needed asap - like a new drug's side effects are intolerable.
I would ask the local hospital for "open access" - it means that the parents can take DC to the children's wards, anytime they are worried about DC, rather than having to go through A & E first. If they call 999, the paramedics will take DC straight to the paediatric assessment unit, rather than spending 4 hours in A & E first, assuming they have spare bed. If they don't have a bed, then the parents will have to wait in A & E first.
The advantage of GOSH is that it is next door to the National Hospital for Neurology and Neurosurgery (aka Queen Sq), which is the top place in the UK for adults with severe epilepsy afaik. They do their research in conjunction with the Epilepsy Society, at Chalfonts St Peters, which is a world leading research centre in epilepsy. So, when DC makes the transition from paediatric services to adults, it is a natural transition to go to Queen Sq!
If DC needs 2:1 care, then I suggest when the parents get a permanent address in the UK, they speak either to IPSEA or SOS!SEN about how to request an assessment for an EHC plan - the most reliable way to get support for children in schools with special educational needs (SEN), especially a child needing 1:1 care full time. Children with severe epilepsy are likely to need extra care on account of their seizures; but also the seizures and drugs impact on mood, attention and memory all of which are key to learning in the classroom and will cause SEN. In fact, if I were to make a request for an assessment for an EHC plan for my DC with severe epilepsy, as I'd just moved into the country, I'd ask for it to be done as an emergency - because the statutory timescales are way too long in this type of case anyway! DC would need 1:1 support at school, as soon as they start from the sound of it!
Is DC within the normal intelligence range, or are there associated learning disabilities? If they are of normal intelligence, any mainstream school is likely to need training from health professionals (like an epilepsy nurse) to develop a health care plan for in school.
If there are learning disabilities, then any child needs an EHC plan to get considered for a special school. Personally, I can't recommend Surrey as a place to live with a child with SEN; but if I were the parents, I'd go and look at Young Epilepsy, a specialist epilepsy school in Lingfield, Surrey with a view to DC going as a day pupil, at such a young age. They have an onsite medical centre (run in conjunction with GOSH), and all the expertise for dealing with severe epilepsy. A class typically has 6 children, a teacher and two classroom teaching assistants; but children with particularly severe epilepsy or challenging behaviour can have their own 1:1 TA on top.
At the same time, I would put in a request to the Children's Social Services for an assessment of need for care and support under S17 of the Children's Act 1989 - for help at home out of school hours. I would also as the parents, put in a request for a carers' assessment - to be done holistically with the whole family approach, because any siblings are likely to be impacted too, by having to act as young carers.
The parents should not listen to anything from Children's Social Services about they don't do this or that - once the child meets the critieria for help, then they should get what they need!
For instance, DD was a weekly boarder at a specialist residential school, so the two of us could cope for a weekend; but I could not cope for weeks on my own in the school holidays. We got from Social Services at our request:
- a care worker from 10 am to 6 pm every day, Monday to Friday - I did not want strangers in the house before breakfast. They would bath DD, wash her hair, get her food and drinks, do her laundry, play games with her in the mornings; then the careworker and I would take her out somewhere in the afternoons to reduce the number of seizures. (Inactivity is a big trigger for her)
- two care workers, when I had health appointments, because they accepted it was too stressful for one person to look after DD on their own in our house, never mind out in the community
- two care workers for 4 hours a week, to enable DH and I have some respite, by going out in an evening or afternoon at a weekend
- taxi transport to and from school, with an escort trained in the use of midazolam
At the time, she was at Young Epilepsy, I heard young people in Surrey were getting 70 hours a week support from social services - ie 10 hours a day every day of the week in the school holidays.
Once the assessment of need by Children's Social Services is underway and not before, I would put in a request for DC to be assessed for Continuing Healthcare (CHC) funding by the NHS - this is for when all social care needs stem from a primary health care condition, as in the case of severe epilepsy. Look up the NHS screening checklist for children - uncontrolled epilepsy rates as a "severe", so DC should be put forward for the full Decision Support Tool assessment. The NHS can arrange nursing support in the home.
If DC were to need to go to Young Epilepsy, then the funding for their placement might well be shared between education, social services and/or health - so, its helpful to find out how much support DC would need from social services or the NHS CHC.
Ideally, there would be a local respite centre, which could care for DC overnight or for the odd weekend, to provide respite to the family - if they can cope with severe epilepsy.
We could have had carers at night; but we never wanted strangers in the house 24/7 - anyway DD's seizures woke the whole household up at night. However, I met plenty of agency care workers, who had cared for very sick children overnight for years.
I don't know about emotional support networks for the parents - best place to look are groups for parents of children with SEN (although a life threatening condition is a bit different from say dyslexia or dyspraxia); and the epilepsy nurses. I paid for private counselling. DH is offered CBT/counselling/anti-depressants every time he goes to the GPs' about anything!
Young Epilepsy, Epilepsy Action and the Epilepsy Society all run helplines for parents of children with epilepsy - although for advice on SEN (ie support and placement in schools), I'd go to IPSEA or SOS!SEN, who specialise in studying education law, which applies to all children.
The parents should also apply for Disability Living Allowance for DC - a benefit to cover the extra costs of disability. It has two components - care and mobility. DD gets the highest rate for both (because she needs care 24/7 due to frequent seizures). So, she gets a Motability car, paid for by the Department of Work and Pensions. This also exempts the car from most tolls and the congestion charge in London.
The parents could also apply for a blue badge, if DC has regular seizures and either needs to be carried back to the car unconscious; or taken to hospital to be checked over for injuries, after a drop attack. DD has had a blue badge for years. This also exempts the car from most tolls and the congestion charge in London.
Many attractions either offer a discount to disabled children and/or allow a carer in for free. Theme parks can be particularly helpful for children, who can't queue (because they are likely to have a seizure in a long queue) - the child and carer don't have to queue, they get straight into rides/attractions, etc. DD also has a CEA card - it allows a carer to go into the cinema with her for free.