Rights in healthcare
In England, the NHS constitution sets out the principles and values of the NHS in England, and explains the rights and responsibilities of patients, public and staff.
The NHS has a duty to:
- assess your child to identify their health needs.
- provide the services needed based on an 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 the education or social care parts of a child's Education, Health and Care Plan if they have one. For example, many deaf children receive speech and language therapy provided by the schools service because it is written into the education part of their plan.
- 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. If your child is being assessed under the Assessment Framework then any NHS professionals you see should share any relevant information with colleagues with your agreement.
- ensure that the views of disabled children and their families influence the planning and provision of health services.
The rights of NHS patients include the right:
- to receive care and treatment that is appropriate to you, meets your needs and reflects your preferences
- to access certain services commissioned by NHS bodies within maximum waiting times, or for the NHS to take all reasonable steps to offer you a range of suitable alternative providers if this is not possible
- not to be unlawfully discriminated against in the provision of NHS services
- to be treated with a professional standard of care, by appropriately qualified and experienced staff
- to be treated with dignity and respect, in accordance with your human rights.
The Council for Disabled Children (CDC) has an interactive and accessible online tool for children and young people to help them understand their rights in the health system. This online tool is aimed at children and young people in England but some of the information may still be helpful for children and young people in other parts of the UK.
The Constitution doesn’t apply to NHS services in other parts of the UK but other rights or support are in place:
- In Scotland, your health rights are set out through the Charter of Patient Rights and Responsibilities.
- In Wales, Health and Care Standards outline what you can expect from health services.
- In Northern Ireland, the Patient and Client Council provides information and support to patients.
The Equality Act 2010 (England, Scotland and Wales) and the Disability Discrimination Act 1995 (Northern Ireland) also mean that health services must make reasonable adjustments to make sure that you can access their services.
An example of a reasonable adjustment might be making sure that the health service books any communication support that your child needs to attend any health appointments. For more information see the Rights to Equality page for your nation.
You have a right to expect certain standards from your child’s audiology service. Below are some quality standards guides for different areas of audiology, as well as vision care for deaf children.
These guides are written for professionals, but you may want to read them yourself or share them with the professionals supporting your child.
- Modernising children’s hearing aid services guidelines and quality standards.
- Quality Standards for the Use of Personal Radio Aids.
Transition to adult services
Your child will usually move from child to adult audiology services between the ages of 16 and 21. We’ve produced some quality standards guidelines that can help you and your child know what you have a right to expect during this transition: Quality Standards: Transition from paediatric to adult audiology services.
Find out more at Audiology services.
- Quality standards used by the Newborn hearing screening programme.
- Children’s audiology services can become ‘accredited’ (officially recognised as meeting independently assessed standards). This can help to raise standards and reassure parents that their child will receive a high level of care.
Find out if your child’s audiology service is accredited by going to our Listen Up! campaign page.
- Information on the Universal Newborn Hearing Screening Programme.
- Pregnancy and Newborn Screening Standards.
- Quality Standards in Paediatric Audiology.
- Quality Standards: Transition from paediatric to adult audiology services.
Legally the NHS doesn’t have to provide second opinions, but in practise doctors rarely refuse. Find out more at Audiology services.
If you’re unhappy with your child’s audiology service then we encourage you to express your opinion and to explain how services could be improved. Find out more at Audiology services.
Similarly, if you’re unhappy about any other health service, such as your GP, speech and language therapist or hospital, visit the website for the service provider for information about how to give feedback or make a complaint.
Under the Equality Act 2010 (or Disability Discrimination Act 1995), health bodies must make reasonable adjustments so that you can access health services. This includes making sure that information is accessible and that you get the communication support you need.
In England, since 31 July 2016, all organisations that provide NHS care or adult social care are legally required to follow the Accessible Information Standard.
The Standard aims to make sure that people who have a disability or sensory loss get information that they can access and understand, and any communication support that they need.
Find out more at www.england.nhs.uk.
In Wales the All Wales Standards for Accessible Communication and Information for People with Sensory Loss were launched in December 2013. The standards set out the level of service that people with sensory loss have a right to expect from their healthcare providers.
In Scotland, the Charter of Patient Rights and Responsibilities states that you have the right to be given information in a way you can understand and which helps you make informed choices about your health care.
As your child gets older they have a right to expect to be able to access health services independently. Our My Life, My Health resources for deaf young people, parents and health professionals help support deaf young people’s access to healthcare.
An important part of your child accessing healthcare independently is them having the right communication support. See the above section on Your right to accessible information for more information.
NHS services, and local authorities in the exercise of their public health functions are required by law to “have regard to” the NHS Constitution in their decisions and actions. The NHS Constitution (2015) helps summarise various legal rights (England only) such as:
- 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 management or 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.
NHS organisations and professionals have a ‘duty of candour’. This means being open and honest with patients and their families when things go wrong, providing reasonable support, truthful information, and an apology when things go wrong. The General Medical Council (GMC) and Nursing and Midwifery Council (NMC) publish guidance for professionals here and the Care Quality Commission (CQC) explain the full regulations here.