‘Major change needed’ in mental health and wellbeing care for vulnerable children

Some of Wales’ most vulnerable children are being bounced between services who cannot agree who is responsible for their care, according to a new in-depth report published today (23 June) by the Children’s Commissioner for Wales.

Learn more about the report

According to the Commissioner, in most areas of Wales children experiencing distress with mental health, emotional wellbeing and behavioural issues are not getting the help they need. She said that as the nation slowly and carefully begins to plan its recovery from the pandemic it is more important than ever to ensure services come together to provide tailored help that meets their individual needs, and avoids them having to navigate complicated systems and multiple sources of help.

The Commissioner said getting support should be a simple and smooth process and that no child should be told that they are at the ‘wrong door’ when they ask for help.  The Commissioner wants every part of Wales to take action towards a ‘no wrong door’ approach, learning from the practical examples from across Wales which are highlighted in her report and from the positive changes that have emerged in services as a result of the pandemic.

Case Studies

Jane’s story

When Jane (not her real name) became concerned about her son’s mental health, her attempts to seek help turned into a long period of delays and being passed between services.

“Our son began displaying signs of poor mental health at the age of 10 – he was referred to the primary mental health team by the GP in May 2017.  Due to a possible diagnosis of ASD (Autism Spectrum Disorder) he was moved onto the neurodevelopmental pathway for this and removed from the waiting list for primary mental health, we were not informed of this part of the process and only found out 6 months later when I phoned to check on the status of the referral.

“Following a diagnosis of ASD in April 2018, our son was referred to Child and Adolescent Mental Health Services. He was eventually seen once in August 2018, by a consultant who had limited ability to communicate with our son due to his ASD and discharged him after the first and only appointment telling us “his is depressed because he has ASD, it is very common”.

“We were given two leaflets of voluntary agencies to contact, one of which we had already accessed for help and the other we could not access because of where we lived.  My son has since been referred again to primary mental health services by the ASD paediatrician but this referral was rejected as the referral needed to be made by a GP. My son has therefore never actually received any input for his mental health.

“This is just one child, one story, but there are literally hundreds of children in south wales in a similar situation whose mental health is deteriorating because they cannot access the services and support they need.”

Deborah’s story

Deborah (not her real name) has cared for Catrin since February 2019 as a result of her mother’s drug and alcohol addiction. Catrin had been self-harming and had physical signs of abuse in her past. Deborah is now in the process of applying to be Catrin’s special guardian.

Throughout her time caring for Catrin she’s been left frustrated by the help available for her mental health issues.

Deborah said:

“Catrin self-harms and has done for the last 18 months.

“We eventually got a referral to Primary Mental Health as Catrin self-harmed on her face. She was desperate for help. There was a wait of around three months before she had an assessment and another wait of two months where we were told Catrin had been put on a waiting list.

“During this time Catrin self-harmed to the point we had to take her to A&E for stitches. I found her in the bathroom, covered in blood and just sat there resigned. We went to A&E for medical help. She is now under the CAMHS crisis team. The time between Catrin going to A&E, and being seen by someone at the crisis team at CAMHS was 10 days. She is still under them now. This has been after 12 months of battling with health and social care and who is going to pay for therapy.

“It is still not clear who it will be as CAMHS have to have a meeting to discuss. The nurse who saw Catrin has said her problems are above what a nurse in CAMHS can deal with, she ideally needs to see a psychologist. Social services are saying it is for health to pick her up and health say this should have been dealt with immediately by social services.

“We now have a social worker who seems to connect well with Catrin, this has taken over 12 months. The saddest part about all of this is it comes down to money. There is a child at the centre of all this who has had a traumatic childhood, and services have not been provided and essentially still aren’t. Both health and social care have not communicated with each other and this 12-year-old girl is screaming out for help and it scares me as to what point and harm Catrin has to do to herself before a structured plan for help is put into place.

Regional Partnership Boards

The job of Wales’ Regional Partnership Boards (RPBs) is to bring health and social care together regionally to serve the needs of their local population.

Over several months leading up to lockdown, Professor Sally Holland spent time visiting all of the Boards. She said:

“Prior to this pandemic I was certain that we needed to be rapidly moving towards a ‘no wrong door’ approach for children and their families. I am more convinced than ever that this is the only solution and should be a critical element of our national response to children and young people’s mental health and wellbeing needs following this period of lockdown.

“Children are waiting too long to access services, they’re being passed from pillar to post and often find themselves lost in a maze of bureaucracy. There are glimmers of hope which confirm to me that what I’m calling for is not unobtainable. I’ve seen some areas taking a no-wrong door approach, where children can enter the system from any point and where professionals come together to find out what help they can all offer, where flexible care is delivered to meet individual’s needs.

“We need ambitions and plans to put initiatives like these in place everywhere at pace; it’s just not good enough to only have pockets of good practice which aren’t reflected elsewhere and it should not be an option that we return to old ways; those old ways didn’t work for children and their families, and they certainly won’t work now.

“This pandemic has forced us to reshape services at pace. Whilst I acknowledge there’ll be difficult decisions ahead, as we move out of lockdown, I hope the period has given Regional Partnership Boards the impetus and confidence to rethink how we deliver some of our public services to children and young people.”

The report highlights:

  • Gwent region’s SPACE-Wellbeing early help panels are the most advanced example found of a timely, ‘no wrong door’ approach to supporting families where children are experiencing mental or emotional health issues or behavioural difficulties. The Commissioner also saw promising signs of similar developments in some other regions.
  • Regions need to do more to learn from each other where good practice examples exist and to be more ambitious in aiming for a ‘no wrong door’ experience right across their regions
  • Regions need to work with children and young people, their families, and the adults that care for them to re-shape the way services work. This includes being more accessible and transparent about the work they do.
  • Children and young people with learning disabilities still too often face a complicated and stressful experience as they move from children’s to adult services
  • Funding and resources can be seen as the property of local authorities or local health boards instead of being seen as ‘whole-region’ funding and resources – which is there to serve the children of that region together.

Gwent SPACE Wellbeing early help panels

In Gwent’s 5 local authority areas, panels of professionals from a range of different services meet weekly to discuss new referrals from multiple sources: GPs, schools, social services, but also parents and families.

The referrals are taken for children who have complex needs which might include a history of trauma, family issues, mental health disorders, social care needs, and disability.

The services around the table can offer different types of help so that each child receives a tailored intervention from a range of services.

A spokesperson for the SPACE-Wellbeing early help panels in Gwent said:

“The Gwent single point of access for children’s emotional wellbeing model has been developed to make sure that children, young people and their families get the right help, first time, at the right time for their mental health and emotional wellbeing needs.

“Prior to implementation, families struggled to navigate systems that were confusing and fragmented, with too many ‘wrong’ front doors and families often ‘bouncing’ between services.

“Evaluation to date has highlighted the value of the SPACE-Wellbeing approach for families and also the benefits for professionals, who feel able to work together in more collaborative and co-ordinated ways and with a better understanding of what each other do.

“We’re on a journey in Gwent and while we haven’t yet reached our destination, SPACE-wellbeing is certainly a key milestone along the way towards an integrated system that delivers the best possible outcomes for children’s mental health and emotional wellbeing.”

Next steps

The report sets out a series of recommendations for all Regional Partnership Boards around their duties, and for the Welsh Government, including the need for robust accountability mechanisms and to ensure funding, support and monitoring of work towards long-term strategies. The Commissioner has committed to meeting with every Regional Partnership Board again in 2021-22 in order to check up on and evaluate their progress against her recommendations. Young people will be invited to accompany the Commissioner at these meetings.

Professor Holland added:

“We can and must completely change how some of our most vulnerable children’s needs are responded to. Too often, I hear of situations where health, social care and other professionals are, sometimes literally, arguing over the heads of children with complex needs; when they cannot agree who is responsible for their care. As one young person told me during this work: We need to unite to un-complicate.”