Deaf children & the NHS – your entitlements

Posted on: August 25, 2011

If you live in the UK you can’t help to have noticed that financial cuts are happening. Everywhere. To NHS, education, social care, young people’s services, you name it. NDCS is campaigning hard to Save Services for Deaf Children. As part of this I’ve been tasked with writing a new factsheet on what parents of deaf children we are legally entitled to from NHS audiology services. Whilst that goes through the production process I thought I’d share what I’ve found out.

The NHS has a duty to:

  • assess your child to identify their health needs.
  • provide the services needed based on the assessment. This includes provision of hearing aids, appropriate therapy, child and adolescent mental health services (CAMHS), end-of-life (palliative) care and equipment services (such as wheelchairs). The NHS does not have to provide services which are already provided through a child’s Statement of Special Educational Needs if they have one. For example, many deaf children receive speech and language therapy provided by the schools service because it is written into their Statement.
  • work with education and social care providers to determine whether additional help and support is needed by a disabled child and their family, and which agencies might be best placed to give that help. Local authorities (responsible for education and social care services) use the ‘Assessment Framework’ and the NHS has a duty to work with education and social care colleagues to enable them to comply with their assessment duties. This means that if your child is being assessed under the Assessment Framework then any NHS professionals you see should any share relevant information with colleagues with your agreement.
  • ensure that the views of disabled children and their families inform the planning and provision of health services.
  • take the lead responsibility for a child’s care package for children with a ‘primary’ health need, and may have a duty to provide short break care.
  • consider ‘direct payments’ for children, perhaps through ‘User Independent Trusts’ (a virtual direct payment) or transferring funds to the LA.

Steve Broach is a Barrister who writes on defending services for disabled children using the law and if you’re interested in a fuller discussion of the central legal duties on public bodies I recommended his ‘Cemented to the floor by law’: Respecting legal duties in a time of cuts.

The NHS Constitution (2010) introduced further ‘rights’ which are defined as legal rights (in England only):

  • the right to choose which hospital you’re referred to by your GP.
  • the right to be seen within 18 weeks from the time you are referred to the time your treatment begins. The term ‘treatment’ includes hearing aid fitting, grommet surgery and cochlear implant surgery. If the service you are referred to is unable to meet these waiting times the NHS should take all reasonable steps to offer you a range of alternative providers. You do not have to go ahead with any treatment options in these timescales, for example if you need further time to think about the options (for example during cochlear implant assessment), or when your consultant advises a period of monitoring first (for example prior to grommet surgery).
  • the right to drugs and treatments that have been recommended by NICE for use in the NHS, if your doctor says they are clinically appropriate for your child.
  • the right to be involved in discussions about your child’s healthcare, and to be given information to enable you to do this.
  • the right to give your informed consent and right to accept or refuse treatment.
  • the right to see your child’s health records.
  • the right to have any complaint you make about NHS services dealt with efficiently and to have it properly investigated.

In return it is necessary for the public and service users to do what they can to look after their own health, and ensure that NHS resources are used effectively and responsibly including:

  • recognising that you can make a significant contribution to your own, and your family’s good health and wellbeing, and taking some personal responsibility for it.
  • registering with a GP practice.
  • treating NHS staff and other patients with respect.
  • providing accurate information about your child’s health.
  • following courses of treatment you’ve agreed to, and talking to your health professional if you find this difficult.
  • keeping appointments – or if you have to cancel, doing so in good time.
  • giving feedback – both positive and negative – about care you’ve received.

Other entitlements include:

You may be entitled to help with your travel costs to appointments through the ‘Healthcare Travel Cost Scheme’ (HTCS) if you are under the care of a consultant (such as an ENT or Audiovestibular Consultant, or Paediatrician) and are in receipt of certain benefits or qualify under the NHS low-income scheme.

And if a hearing aid or cochlear implant is damaged or lost, you have the right to request a committee of three independent people is convened to determine that the damage or loss was negligent before the NHS can charge you for it. The NHS can only charge you exactly what the hearing aid cost them to purchase it. Further information in my earlier blog post on the subject.

So what can you do if you feel your local NHS is not meeting your child’s needs?

You could ask for a second opinion. Legally the NHS does not have to provide second opinions, however the British Medical Association does advise doctors to provide one if requested and health professionals will rarely refuse. Usually the doctor in charge of your child’s audiological or ENT care will arrange a second opinion for you. If you prefer you can ask your family doctor (GP) to refer you for a second opinion.

Or you may feel you need to complain about it. The first step should be to speak to your consultant, keyworker or the head of service and explain your concerns to them. If your concern is a general one or you have suggestions for ways to improve the service you could also contact your local Children’s Hearing Services Working Group (CHSWG) or similar group. Most areas have a group which is made up of representatives from each discipline that works with deaf children as well as a representative parent of a deaf child. It is worth asking this parent about the current situation locally and solutions to the problem that have been discussed. Your audiology or local Deaf Children’s Society should be able to supply you with their contact details. If your area doesn’t have a CHSWG then contact the hospital Patientdvice and Liaison Service (PALS) who can discuss the situation with the department for you. Contact details for your local PALS is available from your hospital trust’s website. Every hospital trust has a complaints procedure and leaflets explaining this should be available in waiting areas, from their website or you can ring the hospital PALS and ask them to send you a copy. Trusts are obliged to reply to you in writing within a specified time.

Further information

For further information on what you can expect from your local audiology service and the standards they work to read the NDCS webpage ‘Your audiology service’.

If your child is suffering through cuts locally please tell NDCS about them by adding the details to their cuts map. And if you need any help or support contact their Freephone Helpline.


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