Continuing Care
After diagnosis, children remain under the care of paediatric services until they move to adult services. Children may be seen regularly at a hospital, children’s development/therapy centre, at their special school, or at a local health/primary care centre or other community setting.
- The healthcare facilities
- Your GP
- Your health visitor
- The school nurse
- Seeing a commmunity paediatrician
- Therapy Services
- Going to A&E
- In-patient treatment
- Tips for managing stays in hospital
- Complementary medicine
The healthcare facilities
C.A.R.I.N.4 - Continuing care And Respite In Nottingham 4 families
The C.A.R.I.N 4 Families Team is a team of children’s community nurses and family support workers based at the Queens Medical Centre campus.
They are a short breaks/ continuing care service, providing care for children with complex health needs in their own homes or other community settings.
Their aim is to work alongside parents and accompany children and young people on their journey through life, creating positive experiences along the way which will become memories for the future.
Their mission is to promote excellence and individuality in the provision of support for children and young people with complex, long term health needs and their families. Working closely alongside other agencies, we are able to provide a holistic family centred care, which is respectful of all cultural needs. Our service promotes the empowerment of children, young people and their families by providing opportunities that will enable them to live ordinary lives"
For more information please contact the team directly:
C.A.R.I.N 4 Families Team
Children's Community Nurses Offices, C12 Curie Court, Queens Medical Centre campus, Nottingham University Hospitals NHS Trust, Derby Road, Nottingham, NG7 2UH
Telephone: 0115 9249924 extension: 62738
CAHMS does have a Day Unit and an in-patient unit for adolescents with serious psychiatric conditions
Day Unit
Thorneywood Campus, Porchester Road, Nottingham NG3 6LF
Telephone 0115 8440533
Day unit for children aged 5–13. Children would attend the unit for assessment and then probably part-time whilst also attending a mainstream school.
An in-patient unit for young people aged 12–18 which provides assessment and treatment of psychiatric disorders.
Were given £6505 to be spent on a number of events and activities for the children they care for. These will take place over 2010 and include:
- A Christmas Party with a circus workshop.
- A Bamboozle Theatre puppet Event for our more complex children allowing them to experience theatre play at the individual child’s level through using lights, touch, sounds and puppets.
- Trips out for bowling etc specific to the individual child's interests and needs.
- Train ride day out
- Twin lakes day out
For more information please contact the team directly:
C.A.R.I.N 4 Families Team
Children's Community Nurses Offices, C12 Curie Court, Queens Medical Centre campus, Nottingham University Hospitals NHS Trust, Derby Road, Nottingham, NG7 2UH
Telephone: 0115 9249924 extension: 62738
The following individuals or services may also play an important part in your child's continuing care.
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.
You can find GP practices on the NHS Choices website
Your health visitor
Health visitors are nurses or midwives with further training in child development and community health. They can give advice and practical help to enable your child to stay well and to cope with illness. They can refer your child to local services and arrange for you to get medical aids e.g. nappies from age of 4 years. You can contact your GP or your local health centre and they will be able to put you in touch with your health visitor. Health visitors also run clinics at local Sure Start Children’s Centres.
The school nurse
If your child is at a state school, the school will have access to the school nursing team. This includes registered nurses, nursery nurses and healthcare assistants. School nurses are qualified experienced nurses who have undertaken further training in community specialist practice. These nurses work with several schools so they won’t be at your
child’s school all the time. School nurses will act as a contact for health advice and information for young people and their families, they support children with disabilities and complex health needs and start and support activities to promote health across the school and community. The school nurse will have good links with other services which can help you. Your school should help you contact the school nurse.
Seeing a community paediatrician
Community paediatricians are child health doctors who work outside hospitals. They see children in local health centres, in schools, at GP surgeries, and at the Children’s (Child Development) Centres. They have experience in working with children with special needs and can involve other specialists to help assess and treat your child if
necessary. Your GP or health visitor can refer you or you could arrange to see your community paediatrician through your child’s school: every school has a named paediatrician, the ‘school doctor’ who cares for children in that school. There are no community paediatricians covering the Bassetlaw area.
Therapy Services
You need to be referred to these services:
Paediatric Physiotherapy
This service provides assessment and treatment for children with recognised difficulties/impairments including those with a neurological condition, including:
- Cerebral Palsy
- Duchenne Muscular Dystrophy
- Spina Bifida
- Toe walking and other gait anomalies
- Profound and multiple learning difficulties (PMLD)
- Development delay
- Motor control difficulties
- Syndromes
City and county outside Bassetlaw Children’s Centre, City Hospital Campus, Hucknall Road, Nottingham NG5 1PB
Telephone 0115 8831111
The Women and Children's Centre, Children’s Therapy Centre, Level 2, Kings Mill Hospital, Mansfield Road, Sutton-in- Ashfield, Notts NG17 4JL
Telephone 01623 785 019
Bassetlaw Child Development Centre, Bassetlaw Hospital, Kilton, Worksop Notts. S81 OBD
Telephone 01909 500990
Community Paediatric Occupational Therapy & Play Team
The Paediatric Occupational Therapy Service is primarily involved in the assessment and intervention of childhood conditions which may inhibit progress of physical and functional development. This range of conditions will include:
- Neurological conditions eg Cerebral Palsy
- Neuromuscular conditions eg Muscular Dystrophy
- Syndromes eg Retts
- Developmental Coordination Disorder
- Orthopaedic conditions eg post surgery
- Genetic conditions eg Osteogenesis Imperfecta
- Children with moderate and severe learning disabilities
- Children may be seen in a group session, or individually depending on their needs. All intervention is in relation to the identified needs of the child.
In Bassetlaw the range of conditions may vary slightly. Children with eg. ADHD may be able to access occupational therapy in Bassetlaw.
Children’s Occupational Therapy (Bassetlaw)
Amelia Court, Building 1, Retford Hospital, North Road, Retford, Nottinghamshire, DN22 7XF
Telephone 01777 863588
Children’s Occupational Therapy (outside Bassetlaw)
The Children’s Centre, City Hospital Campus, Hucknall Road, Nottingham NG5 1PB
Telephone 0115 8831135 (Sarah Jessop, Head Paediatric OT) or 0115 8831141(admin)
Telephone 01623 622515 ex 3370 or 01623 785019
For children aged 0-19 with neurological, neuromuscular, orthopaedic, or genetic conditions,
Acquired Brain Injury Children's Community Service (ABICCUS)
The brain injury service in Nottingham is only for people aged 16 years and over. Younger children would go via acute services in hospitals and then would then be followed up by community paediatricians and therapists etc.
Going to A&E
Accidents and emergencies might happen to anyone at any time. The main A&E departments for this area are at Queen’s Medical Centre, at King’s Mill Hospital, at Bassetlaw Hospital with a smaller unit at Newark Hospital (Newark Hospital: 01636 685810)Doncaster Royal Infirmary also has an A&E unit.
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 may not be readily available. Obviously, in this situation, parents have a crucial role to play in helping staff to help their child.
In-patient treatment
In Nottinghamshire, most children who need hospital treatment go to the local hospitals but some children may be sent specialised centres such as Great Ormond Street, before returning to Nottinghamshire for their ongoing care.
If you are coming to stay at the Nottingham Children’s Hospital at Queen’s Medical Centre you can get extra information about accommodation etc from
Children’s Services, E Floor, Office SE/2105 South Block, QMC, Derby Road, Nottingham NG7 2UH
Telephone 0115 9249924 ex 66522
Email denise.martin@nuh.nhs.uk
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
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.
Complementary medicine
Complementary medicine includes treatments such as osteopathy, acupuncture, homeopathy, massage and aromatherapy. Some parents have found some of these treatments useful. 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.
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.
Many health professions are regulated by the Health Professions Council including arts (art, music or drama) therapists, and psychotherapists and counsellors are likely to be included in the near future.