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 Royal Alexander Children's Hospital ('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
• Therapies

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.

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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Therapies

Children who have more complex needs and difficulties may require help to learn some of the skills they will need to cope with daily living. If parents are concerned about their child’s speech then it may be necessary for the child to be referred to a speech and language therapist. Help with movement and balance can be provided by a physiotherapist and help with daily living skills can be provided by an occupational therapist.

If you suspect that your child needs some therapy, they will need to be referred by a professional already working with them. This is done through the ‘integrated care pathway’ which basically means a process whereby a number of different professionals meet to decide on the best services and support for your family. The waiting times from referral to actually being seen by the therapist may seem lengthy and it can often be frustrating for parents at home feeling that valuable time is being wasted before their child is seen.

Once a referral has been made you will be seen for an initial assessment and then a programme of intervention will be prescribed by the therapist. This is not always delivered by them in person but may be given by assistants in school or in your child’s nursery who are trained by the therapist to deliver the care needed. While your child is having the therapy programme their progress will always be reviewed by the therapist in charge of their care. It is important that you are kept informed throughout this time since your child will benefit more if the exercises they are given during the therapy sessions are carried on at home.

Therapy services have improved in the last couple of years in Brighton and Hove but parents still have to wait a long time for the help they need for their children. Therapy sessions are not always given on an individual basis and some children will have group sessions with other children who have similar needs. However, this can be beneficial to children as they often learn skills from one another.

Speech and Language Therapy

Speech and Language Therapists diagnose and treat problems of understanding, communicating and speaking and can also help with swallowing and eating difficulties.

If you think your child has these kinds of difficulties or someone working with your child suggests that they do, you should be referred to the speech and language therapy service (SLT), with your consent. The SLT service will provide assessment, diagnosis and management of your child’s communication difficulties. After an initial assessment, your child may get direct sessions with a speech and language therapist on an individual basis or in a group. Or someone already working with your child, for example a TA at their school or their nursery worker, may get a programme of exercises or activities to use with your child.

In either case, the therapeutic programme will always be reviewed by the speech and language therapy service. Be aware that therapy will not automatically go on forever and may be put in place for a specific period of time.

Part of the SLT service focuses on children with more complex needs. This service is based at the Seaside View Child Development Centre. The help provided by the complex needs team may be given in association with PRESENS, your child’s special school or unit or their mainstream school.

For further information you can contact 01273 267337.

Occupational Therapy

Occupational Therapists (OTs) help children develop everyday skills, such as feeding themselves, getting dressed and playing. They will assess and treat children at home, at school or pre-school or at the Seaside View Child Development Centre.

After assessment, an OT will write a report that identifies any areas where your child needs help. This might also include advice on programmes of activity, how to adapt tasks to your child’s ability or advice on equipment.

Anyone can refer a child to the OT service, but the majority of referrals come from paediatricians or special needs coordinators in schools. All referrals go to the Seaside View Child Developmental Centre Referrals Panel.

A word about the other kinds of OT
There’s another kind of OT, called a community occupational therapist, who is employed by social services to carry out assessments for families who need equipment and adaptations at home. Be aware that these won't be the same OTs you meet through the Health Service.

Physiotherapy

Physiotherapists help with children’s movement skills and physical mobility.

There are two paediatric physiotherapy services covering Brighton and Hove: one is based at Seaside View Child Development Centre and is generally responsible for treating children with complex needs and/or developmental difficulties; the other is based at the Royal Alexandra Children’s Hospital and provides in-patient care, as well as out-patient management of respiratory, musculo-skeletal and rheumatological conditions, amongst others.

Treatment is always based on an individual assessment and may include an individual treatment programme, advice, provision of orthotics, or a combination of these.

At Seaside View, the physiotherapists treat a wide range of conditions, including:

• Developmental delay
• Neurological or neuromuscular disorders such as Cerebral Palsy, Muscular Dystrophy
• Congenital syndromes and metabolic diseases such as Down’s Syndrome, Rett Syndrome
• Co-ordination difficulties

Though based at Seaside View, the child development and disability physiotherapy service may also visit community settings such as schools, nurseries or homes.

Psychological therapies

If your child has mental health, behavioural or learning difficulties they may benefit from things like play therapy, cognitive behavioural therapy or counselling. These kind of therapies will be provided either through mental health workers in your local Schools and Community Team or specialist Child and Adolescent Mental Health (CAMHS) practitioners.

In the Schools and Community Team there are community CAMHS workers and educational psychologists who can carry out mental health or educational assessments and do individual and group therapy work with children, families and schools. The kinds of therapies they offer might include CBT, solution focused brief therapy, systemic family therapy, motivational interviewing and narrative therapy. They also provide consultation for school staff, professionals and parents including some drop-in sessions. Also working in this team are school nurses who offer some mental health support to children and young people through health drop-ins, and educational welfare officers who can support you if your child is refusing to attend school because of mental health issues.

Specialist CAMHS may provide more intensive or long-term therapeutic interventions through mental health practitioners such as child psychiatrists.

There is a single point of referral for any kind of psychological therapy – St Stephen’s House. See the section on CAMHS above for the way you should go about getting a referral.

Other therapies

Whoopsadaisy is a charity based in Hove that provides conductive education for children with cerebral palsy and other motor disorders. They organise groups according to the child’s ability and age and then devise a therapy programme for each group. It’s a free to all service, though they also run holiday play schemes for which you will pay.

Music Therapy – Your child may be assessed as needing or benefiting from music therapy but this is not often offered. Your child’s school or another service would have to choose to buy this in. You may be referred to The Belltree Music Therapy Centre, based at Ash Cottage, Woodingdean. Or you could pay for some music therapy yourself privately, if you can afford it.

Therapies in private practise -If you feel your child would benefit from a particular therapy and you are in a position to pay for this privately, there are people like speech and language, occupational therapists and psychologists who work in private practise. We cannot recommend any specific people here, but If you call Amaze’s helpline, we can perhaps give you details of independent therapists or professionals that other parents have used.

Complimentary therapies - Complementary medicine includes treatments such as osteopathy, acupuncture, homeopathy, massage and aromatherapy. Some parents have found some of these treatments useful for themselves or their child. 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 or using Direct Payments (see the Help with Daily Life chapter for more about this). 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.

Active Lightworks is a Brighton based charity that offers low cost complementary therapies such as acupuncture and massage that 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.

You could also contact the Carers Centre to find out about any treatments that are currently available to carers.