The NHS has an obligation to provide healthcare and provision of all essential equipment for the health and wellbeing of your child with no exceptions to disabled children.  At first it is difficult to comprehend the contact you will have with so many different Healthcare professionals depending on your child’s disability. Ranging from all the different therapists to Specialist Consultants and also accepting that some of these will not be based in your local Hospital but will be in child focussed units such as Great Ormond Street, Alder Hey Royal Liverpool Children's Hospital and the Royal London.

Remember that if there is anything you don’t understand about your child’s condition and/or treatment, or if you don’t agree with any of the opinions provided then ask questions and if necessary request a second opinion – don’t go along with anything if you are not completely satisfied.

NHS Wheelchair services:

If it’s difficult for your child to move around even for a short time, a wheelchair may be the answer. An occupational therapist or physiotherapist will assess their needs at home, in hospital or at your local National Health Service (NHS) Wheelchair Assessment Centre. And the NHS Wheelchair Service will help you choose a wheelchair that meets your needs; they will also provide wheelchair accessories, including cushions, armrests or trays.

NHS wheelchairs are provided on loan for as long as they are needed. The NHS will pay for any servicing or repairs as long as they are not caused by misuse or neglect. You will be given the number of the local approved repairer who will be responsible for repairs.

The NHS Wheelchair Service may be able to provide a powered indoor/outdoor wheelchair but only if their professional assessment recommends it. For children this is not normally considered before the age of 5 and generally because of the cost involved there is an extensive waiting list before receiving one – our local area only has funding to issue an average of two powered indoor/outdoor wheelchairs per year. Matthew was placed on the NHS waiting list at 5 years old for a powered indoor/outdoor wheelchair, at age 7 he was still a long way off reaching the top of the list.

Fortunately for us we heard on our local radio station that a local golf club had purchased 2 children’s powered indoor/outdoor wheelchairs and were requesting anyone in need of such equipment to write to them and they would review all requests and select 2 candidates to receive the chairs – Matthew was successful in becoming one of the lucky recipients so at age 7 he had his first powered indoor/outdoor wheelchair. However we were later to discover that privately donated equipment will not be serviced or maintained by your local NHS service (you have to arrange and cover all the repairs and servicing costs).

At age 8 Matthew’s Therapists were concerned that due to his growth his private powered indoor/outdoor wheelchair seat was unsuitable for his posture needs but after much deliberation it was concluded that the NHS Wheelchair service could not provide a different seat to this private wheelchair and that in order to meet his Health needs the NHS Wheelchair Service would need to provide him with a new powered indoor/outdoor wheelchair together with a special seating arrangement – again after several assessments and clinic appointments Matthew (age 9) received a powered indoor/outdoor wheelchair from the NHS Wheelchair service.

Special Seating Service:

This service is linked to the NHS Wheelchair service and is usually provided at central Hospital via a Disablement services centre. They will provide custom made seating for your child's needs (including backrests, footplates and additional straps) which they will install onto your wheelchair (with a new frame if needed). This service again is limited because of the expense and in our local area there is only one special seating clinic each month and because appointments are lengthy they usually only see 4-6 children in any one clinic.

Paediatric Consultant:

This will be your main Consultant contact whose responsibility will be to regularly review your child's overall healthcare, making referrals and co-ordinating all the necessary specialists.

You will attend regular appointments (depending on your child's disability and progress, we now go every 6 months for Matthew and once a year for Tommy).

If you have any concerns with any aspect involving NHS Healthcare always let these be known to your Paediatric Consultant as well as the individuals that the aspect is directly connected with. Never be afraid to voice your concerns as no one can do anything about if they don’t know.

Orthopaedic Consultant:

Is a specialist doctor who treats conditions of the musculoskeletal system, so if your child has mobility needs they will most certainly be under one of these. They will assess your needs for orthotics together with any treatments such as:

•  Botox Injections:
  Drugs such as muscle relaxants can be used to control spasms in the muscles (involuntary tightening) and hyperactivity of the muscles (such as uncontrollable jiggling). Botulinum Toxin (commonly known as Botox) is a type of bacteria that is injected into muscles, making them less stiff and enabling joints to move more freely.
   

•  Selective Dorsal Rhizotomy (SDR):  
  Is a neurosurgical technique used to treat spasticity (increased muscle tone) in the lower limbs. Further information can be found from the SDR leaflet on the INFORMATION page.
   

•  Surgery:
  The surgical procedures used in hemiplegia are generally quite straightforward and involve lengthening or transferring the tendons of muscles, stabilising of joints and on occasion the cutting and re-orientating of bone (osteotomy). The most difficult aspect of surgery is the decision making, in terms of what surgeries to perform and when is the best time to perform surgery. Nowadays most of this type of surgery is performed by orthopaedic surgeons who specialise in the management of children. In complex cases gait analysis can be useful to study walking to help decide on the appropriate surgery.
  After surgery it is often necessary to immobilise the area in a plaster cast, generally for about six weeks. It may then be necessary to use splints to ensure that the correction achieved at surgery is maintained.

 Rehabilitation after surgery is critical, since without good physio input
deformities can readily come back. The rehabilitation period often takes quite a long time and it may be a year or longer before the full benefits are seen. This all means that before surgery is undertaken a plan should he made to identify the resources needed for rehabilitation. There is little point in doing surgery if it is going to take four or five months to get new splints and there is no physiotherapist available.

For many children with hemiplegia surgery will he very helpful at some stage, but it needs to be a part of a whole package of care to ensure that their full potential is achieved.

Matthew has just attended a Specialist Consultation at The Royal London Hospital whereupon the Consultant has decided to undertake surgical intervention by performing an extension of his hamstrings which will mean a 5 day stay in Hospital; we now await the date of the operation.