After diagnosis, children remain under the care of paediatricians until they are 16 or when they leave school. Many children are seen regularly at Seaside View, the Alex, Chailey Heritage, special schools, local clinics or at centres further afield such as a London hospital.

• The healthcare facilities
• Your GP
• Rehabilitation services
• Acquired Brain Injury Children's Community Service (ABICCUS)
• Going to A&E
• In-patient treatment
• Tips for managing stays in hospital
• Complementary medicine

The healthcare facilities

Seaside View Child Development Centre has regular specialised clinics and also holds groups for young children with developmental difficulties. These are run by health visitors, nursery nurses and therapists and offer ongoing assessment, support and therapy.

The Royal Alexandra Children's Hospital moved to its new building on the Sussex County Hosptial site in 2007. It offers both inpatient and outpatient treatment.

Chailey Heritage continues to offer a wide-ranging and highly specialised service for children up to the age of 19 years who have complex needs. Some children may be able to use parts of the service if appropriate.

Children with ongoing eye or ear problems might go for their regular checks to the Alex, but they may be seen at the Sussex Eye Hospital or at the County. Children with chronic asthma receive their care at the Alex. You and your child will probably be given appointments to see the paediatrician or specialist again at regular intervals, and they should write to your child's GP each time to keep them informed about progress and treatment.

Children with psychological or psychiatric problems will be seen at St. Stephen's House, the White House or at one of the local clinics run by the Child and Adolescent Mental Health Services (CAMHS). You may have to wait a couple of months, although urgent cases do take priority. There are no psychiatric inpatient facilities for children or adolescents in Brighton & Hove; local children go to Chalk Hill in Haywards Heath for this type of care. Chalk Hill replaces the centres previously known as Colwood and Larchwood.

Find out more about these Treatment centres and services.

The following individuals or services may also play an important part in your child's continuing care.

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Your GP

It's important to keep up the relationship with your GP, even if most of your child's treatment is at a clinic. Support from GPs can be helpful if you're trying to speed up appointments or find respite care. If you apply for benefits for your child your GP may well be contacted, so it helps to keep them up to date. And of course children with special needs get ordinary illnesses, just as their brothers and sisters do.

It's easy to forget that while specialist doctors are working with children similar to yours all the time, your own GP may only have a few children with special needs in the practice. If your child has a very rare condition, they may be meeting it for the first time. A good GP will appreciate all the information that you are able to give, and respect the skills and knowledge you are sure to acquire.

Some parents find it useful to have a different GP from their children, believing it gives them a better chance of being seen as an individual rather than as the parent of a disabled child. If your relationship with your GP isn't working, it's worth considering changing to another within the practice or, as a last resort, to another practice altogether. See GPs in Who's who in Health for how to do this.

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Rehabilitation services

Based at Brighton General Hospital, the Sussex Rehabilitation Centre provides and adapts aids and equipment for disabled children. Artificial limbs and wheelchairs are supplied and therapy planned to match the child's needs. The engineers and therapists make home visits if necessary. More complex problems are referred on to the Rehabilitation Engineering Unit at Chailey Heritage.

At Chailey Heritage there is a special unit for children with head injuries. They may go there straight from acute care at a hospital, and each child has a completely individualised programme.

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Acquired Brain Injury Children's Community Service (ABICCUS)

If a child or young person is admitted to hospital with an acquired brain injury, ABICCUS is the service that monitors and manages their condition once they return home. ABICCUS may also work with a child or young person after a period of rehabilitation in a unit such as the Children's Head Injury Service (CHIS) at Chailey Heritage. The service aims to co-ordinate care from the range of professionals involved in supporting individual children and maintain it as required while they are in education. Referrals are usually made by the Community Paediatric Service, GPs, the CHIS or another rehabilitation unit although health visitors, school nurses, schools and the Child and Adolescent Mental Health Service (CAMHS) could also refer.  ABICCUS services may continue throughout childhood and adolescence.

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Going to A&E

Accidents and emergencies might happen to anyone at any time. The main high-tech A&E department for this area is at the Sussex County. The Alex has a 24 hour emergency care service for children referred by GPs or arriving via A&E.

You can't take it for granted that an A&E department will always have qualified paediatric nurses on duty, and also, if you are away in another part of the country, your child's medical records will not be readily available. Obviously, in this situation, parents have a crucial role to play in helping staff to help their child.

“I think you can help the Health Service to be more useful to you. We were up at the A&E department at the County three weeks running one time, and I always find if you're in a place like that where you might have to wait a long time, it's no use just sitting there waiting and hoping your child won't have a massive tantrum. You've got to be upfront and you've got to tell them exactly why your child's got to be seen next, and they were always absolutely brilliant and got her in there really fast.”

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In-patient treatment

In Brighton & Hove, most children who need hospital treatment go to the Alex. Sometimes children are sent to Great Ormond Street or to other very specialised centres, where they may spend some time before returning to the Alex for their ongoing care.

Children who are treated at the Alex may already have been seen by specialists at Seaside View. Staff from the two have plenty of contact with each other, and many of the nurses have years of experience of the conditions treated at Seaside View. However, everything you can do to share your own knowledge and help communications will make things easier for your child. See our factsheet, 'Making the best of an admission to hospital'. You should be able to stay with your child in the Alex either in a bed next to theirs or in the parents' accommodation.

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Tips for managing stays in hospital

• You have to be very specific and say, 'Look, she really is like this', and 'No, she can't do this', and 'If you're calm, she'll be calm', or whatever. Be up front so that they know the problems - spell it out!
• If you child has communication difficulties, write out a guide to help the staff understand what he or she is saying. For example, if they use eye signals, how do they indicate for 'toilet' or 'ouch, that hurts'?
• Important messages that you want everybody to be aware of could be written out and taped above the bed or on the locker.
• Talk to everyone, whenever you can, to ensure that as many people as possible understand your child's needs.
• Don't forget that domestic staff may see the children more often than doctors and can be very good at making children feel secure.
• Don't assume that every member of staff knows everything about your child's condition. The information you gave the person in ENT won't necessarily have got through to the X-ray department by the time you will see them.
• Explain to other children in the ward about your child's special needs and find out what your child would like them to know

Sometimes in Brighton children are treated as in-patients at the County rather than the Alex. If you don't like the idea of this, ask whether it's really necessary. It's worth bearing in mind that you should expect your child to be cared for in an environment which suits her, not be placed somewhere which suits the convenience of medical staff.

It is your child, it is not the doctor's child, and if you don't like the way they're bandaging him or they're doing something that you know will upset your child - even though all the other children with that syndrome are bandaged in that way - you say so, you negotiate.

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Complementary medicine

Complementary medicine includes treatments such as osteopathy, acupuncture, homeopathy, massage and aromatherapy. Some parents have found some of these treatments useful. It can be difficult, though, to find out whether the practitioners have proper qualifications - often other parents are the best source of information, although some GPs have an interest in this area of medicine. Many of the established forms of complementary medicine have their own governing body or college, which can advise about finding a well qualified practitioner.

Occasionally, some form of complementary medicine may be available under the NHS but more usually it has to be paid for privately. Some practitioners, however, will offer treatment on a sliding-scale of payment. The Dolphin House Children's Clinic is a registered charity in Brighton, which offers a variety of natural therapies with a sliding scale of fees.

The Belltree Music Therapy Centre is a professional music therapy service based at Ash Cottage, Woodingdean. The service works with young people with learning difficulties at Downs View Link College, specifically with those children who have a music therapy requirement as part of their statement of special educational needs. Private clients can refer themselves to the service or referrals may be made by professionals such as paediatricians, speech and language therapists, social workers, psychologists. When a client self-refers, they will be charged for their initial assessment and then for any subsequent programme of treatments agreed upon after the assessment. Full pricing details are on the Belltree website.

Life's4Living is a charity with offices in Brighton that gives grants for alternative health treatments for both children and parents. Grants vary from £50 a week (for a set period of time) to £2000 for a specific course of treatments and they will consider any treatment that helps improve the quality of life for family members who need it, even a once a week massage for an overworked mum. Grants are only given for treatments that are not available on the NHS.

Active Lightworks is a Brighton based charity that offers low cost complementary therapies to people who find them hard to access or afford. Treatments include acupuncture, massage, reiki and aromatherapy and are designed specifically to support people affected by chronic illness or disability. They are also aimed at carers and those on benefits. Sessions can cost as little as £6 to those on benefits or £10 to carers. All practitioners are fully qualified with a minimum of three years experience. To book call Barbara on 07944 124600.