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Health-related Advocacy

Every year since I began my role as Children’s Commissioner for Wales I have made specific recommendations to Welsh Government in my Annual Reports calling for every child or young person who needs it to have access to an advocate in relation to their healthcare.

In Wales, children and young people currently have statutory access to an independent professional advocate if they:

  • Are in contact with social services and are in care, are leaving care, or need particular extra support with expressing their views on their care (under the provisions of the Social Services and Well-being Wales Act 2014);
  • Are in contact with specialist mental health services and meet certain thresholds of severity of mental ill health under the Mental Health Act 1983;
  • Are over 16 and are deemed to lack capacity to make certain decisions under the Mental Capacity Act 2005.

In social services, there is now an agreed national approach to commissioning and provision of statutory advocacy for children. Those children who can access this service should receive an active offer to access it.

I want to see an active offer of independent professional advocacy extended to children and young people accessing health services more generally.

What does advocacy mean?

Advocacy isn’t just about making a complaint about your care. I am concerned that when some people think of ‘advocacy’, they automatically think ‘complaints’. Advocacy is much more than just complaints, and in fact if a child or young person is given the opportunity to express their views through an advocate, the need to make a formal complaint is likely to be avoided.

Some examples of where children or young people may need an advocate may include:

  • When making decisions about transitions to adult services
  • When facing a decision about a potential course of treatment
  • When their care plan is being developed
  • When they hold a different view from their parents or carers
  • When their parents or carers are unable or unwilling to facilitate their involvement in decision-making

The Social Services and Well-being Act defines advocacy services as:

…services which provide assistance (by way of representation or otherwise) to persons for purposes relating to their care and support…

Advocacy:

  • safeguards individuals who are vulnerable and discriminated against or whom services find difficult to serve
  • speaks up on behalf of individuals who are unable to do so for themselves
  • empowers individuals who need a stronger voice by enabling them to express their own needs and make their own informed decisions
  • enables individuals to gain access to information, explore and understand their options, and to make their views, wishes and feelings known, and actively supports people to make informed choices.

Conveying views accurately

Importantly, independent professional advocates ‘…must ensure individuals’ views are accurately conveyed irrespective of the view of the advocate or others as to what is in the best interests of the individuals’.

Very often the officers in my Investigation and Advice team have to mediate between different services to achieve positive and constructive outcomes for children, and consider what is in the child’s best interests, in accordance with Article 3 of the UNCRC.

In many cases this will reflect the views of the child, and the officers will always want to take account of the child’s views in any case they deal with, but their role is different from an independent professional advocate who is appointed solely to help the child convey their own views.

What does advocacy for children and young people look like?

In July 2019, I held a Child Health Seminar which involved participation from all Health Boards in Wales. At that seminar, we collated a set of core principles for health related advocacy.

These principles include:

  • Consistent, visible and accessible entitlement
    • An active offer, rather than waiting for advocacy to be asked for
    • Explanation of how advocacy works made understandable to young people
    • Staff aware it’s available and how it could be helpful
    • Accessible and all inclusive – e.g. non-verbal or non-communicative advocacy services
    • Consistency through statutory guidelines and a code of conduct
  • Advocacy available beyond complaints and statutory mental health advocates
  • Vulnerable groups who don’t have statutory access to advocacy (low level Mental Health and Neurodevelopmental conditions, for example) should be helped to access support
  • Choice over taking up advocacy for children and young people, and an understanding of options
  • An independent service
  • A specific and separate service for young people
  • Understanding the skills and role of advocate
    • Advocacy does not always work from best interest perspective
    • Professionals must understand role of advocates and the potential for conflict of approach as advocates

 I would expect this advocacy to look like the following:

  • A service which offers face-to-face advocacy to any child or young person who needs it in order to participate in decisions about their own case and understand the treatment that is being offered to them
  • A service which offers face-to-face advocacy recognising additional barriers faced by young people, such as language or disability
  • Advertisement of advocacy services across health settings used by children and young people, in a child-friendly format
  • A service which adheres to the principles of independent professional advocacy
  • A service for children and young people who wish to make complaints
  • A service which is accountable. The service should be monitored and assessed as to how it is advertised and used

A Children’s Rights Approach

My team and I are working hard to encourage all health services to take a children’s rights approach to their work.

This will enable children and young people to work alongside health providers to ensure that services become more child-centred, with better quality information for children and clearer pathways to services such as transitions to adult care.

However, this will not eliminate the need for advocacy. Some children will still need independent support to participate in decision-making about their care or to make a complaint.

What should happen next?

I believe that the best way forward would be for the Welsh Government to engage with children and young people and health boards to establish national standards that all health boards must work towards, and I’m pleased to say that the Welsh Government have taken some action by working to establish a group consisting of all the Health Boards in Wales to consider what national standards might look like.

I was disappointed that the Welsh Government’s Health and Social Care (Quality and Engagement) Bill did not take the opportunity to clarify what health-related advocacy should look like for children and young people in Wales, and has not outlined in detail how the new Citizen Voice Body will support and promote the views of children and young people.

Without a set of agreed national standard for health-related advocacy, I am concerned that children and young people across Wales will continue to miss out on having their voices heard when it comes to their health care. That is why, in this year’s Annual Report, I have made a recommendation that the Welsh Government should establish national standards for health-related advocacy for all children and young people who require it and monitor health boards’ progress towards commissioning sufficient advocacy, and their promotion of it. I hope to see real progress made on this recommendation this year, and for this work to involve the voices of children and young people themselves, health boards and advocacy providers.