Specialist centres for acquired brain injury and funding

This section talks about the different kinds of rehabilitation centres, and how children arrive at them. Rehabilitation centres come in all kinds of shapes and sizes. They can be run by the NHS, private organisations or charities. The aim of rehabilitation is to make children and young people as independent as possible, and help them with skills they may well have lost because of their injury.^1,2

Different kinds of rehabilitation centres

You may hear some described as ‘residential’. Children stay and sleep at these centres as they undergo their therapy.

Some may also offer day services. Choosing a unit will usually involve the clinical team and the family of the child. Where the child goes will depend on factors such as the kind of treatment they need and where in the country they live.

Funding

Before any child can take up a place at a specialist centre, that place has to be paid for. This money might come from different places.

• NHS England will fund a place if a child meets the criteria of needing rehabilitation at a 1A service. An 1A service is for patients with high physical dependency. ³
• Medical insurance.
• Compensation claims (even if a claim hasn’t been resolved, some interim payments may be made).⁴
• Self-funded, which means the family pays for the place at a rehabilitation centre.
• Embassies if the child is from another country.

There will usually be a structured process. There might be some negotiation between the specialist centre offering the service and the authority paying for it. There might also be issues such as waiting lists to contend with.

An example of the ‘journey’ a family might experience:

1. Clinical staff (doctors, nurses, therapists) from the centre will meet with the child and parents. This may take place in hospital, at home or at the centre (if the child is able to travel there). The aim is to ensure the centre is able to meet the child’s needs.
2. The assessment findings are reported back to an admissions panel, who agree the recommendations.
3. An assessment report is made, setting out the kind of support the child needs.
4. The centre will then approach the funding authority to fund an assessment (or placement).They may advise on an alternative care plan if the centre isn’t deemed the right place for the child.
5. The report then goes to the funding authority, the parents and the referrer.
6. The centre will keep track of the funding process until a decision is made to either approve or decline the funding.
7. Parents are informed of the decision – usually by the centre itself.

Sometimes the funding authority may choose not to fund a place. They will write to parents advising them of the decision. And they will explain their appeals process.

Naturally all of this can be a very stressful time for parents as their child’s immediate future is decided by strangers.

It can be overwhelming dealing with so many different professionals and may even be intimidating for some parents.^{5, 6}

People warned us not to take it personally if you get turned down, but how can you not? It’s your child and you’re bound to want the best for them, whatever it takes, or however much money it costs."⁷ A parent's experience

If it is appropriate for a child to go to a specialist centre then families face the separation, travel and enormous upheaval that may come with moving a child into a residential rehabilitation centre.

Most of the staff at the centres will have seen lots of families in the same situation and should be able to help during this process. They should also answer any questions you have about the referral process.

It’s important to remember the role you play in this process. The experts have long recognised the benefits of a supportive family and friends in rehabilitation. A family has a special rapport with their child and are unique in their knowledge of their child.⁸