Conversations in the time of COVID and how we continue to connect, collaborate and co-produce……perspectives from a Parent Representative and a Clinical Psychologist.

 

“It’s an ill wind that blows no good” is a saying I was brought up with, and probably influenced my choice of career. An ability to spot the light in the dark is an essential quality for a psychologist. It’s important to acknowledge, however, that COVID has seriously challenged this, especially as connecting with people, being alongside them and forming relationships is my primary professional tool. I am trying to let myself off the hook though; it is a global pandemic after all.

Having said that, as we settle into the new normal there are some consistent messages emerging about creative solutions that we must hold on to as we plough through this – digital technology and virtual reaching out being the most obvious one. A clear example of this is in my new role as Chair of the Early Help and Enhanced Support strand of T4CYP (2). Co-production is one of our core values and as I started in this role on the 1st of April it faced an immediate and unprecedented challenge. How can we get together if getting together is the one thing we cannot do?

Ceri, who is our Parent Representative for the programme, and I wanted to share our early ‘virtual’ conversations to show just how much can be achieved through this route. She leads Parent’s Voices in Wales, a support group for parents of children experiencing mental health difficulties, additional learning needs and neurodiversity. Our paths have crossed in various ways, most notably on twitter. We recently struck up an e-mail exchange that tried to get to the heart of what matters most from our respective vantage points. I am not sure we would have learnt so much so quickly through more traditional meeting forums. We are sharing our exchange during Mental Health Awareness Week because we took a guess that if we were interested in each other’s answers you might be too. But first a word from Ceri:

Normally as a parent, if a Consultant Psychologist asks you to undertake a joint blog the first reaction may be to look over your shoulder and question if they were speaking to you or someone else.  But this isn’t any Consultant Psychologist.  This is an all parties welcoming professional who is jointly leading a Gwent service based on active listening and who holds a clear vision of unity involving families and services supporting our children and young people.  Who wouldn’t jump at the chance to have this platform with Liz to share our parental views on the mental health of our children and young people?

That’s very kind Ceri but I feel equally privileged to have this opportunity. There is something about the slowing down that formulating a response to e-mails has allowed that has been so powerful.

Clinical Psychologist to Parent Group:

What have been the most helpful experiences of services that you hear described?

This is relevant to all public services at any stage of a child’s life, so I will speak as if all services are one – as if a whole systems approach were already embedded and each service were an ambassador for the other. I love this question from Liz because it evokes a memory of the only positive moment in a child/young person’s troubled journey.  It takes you to the moment that every parent/carer remembers – the day they were truly heard by a professional.

Parents/carers never forget finding that one person in a service they can trust, the person who takes time to really listen and understand.  It’s that moment when a parent/carer’s expert knowledge of their child/young person is respected over and above the expertise of the professional – the most stress relieving moment, an instantaneous release. When the child/young person also connects with this practitioner, we are almost euphoric because we know this is good and we know this is going to work!   This great moment is not fully appreciated unless a family has firstly attended several meetings, appointments, programmes and read a hundred leaflets.  What makes this professional different to others, is their genuine concern, their active listening, their display of knowledge and understanding.  Be warned however, families can detect pretence, one wrong move and you have lost us. No pressure of course!

We usually witness active listening during an assessment stage, when the professional is gathering information and piecing together the jigsaw of a child/young person’s life so to formulate a plan.  The enthusiasm of the assessor suggests a deep understanding of our child/young person’s trauma and provides hope for an answer.  Parents/carers cling to the hope that this person will continue throughout the whole process until our child/young person has recovered, but this is sadly not always the case.  Changes in staff mean a lack of continuity in therapy, often reported as the most unhelpful experience and thus the moment of euphoria is short lived.

Despite setbacks in continuity, we cannot detract from the power of empathy, active listening and trust between a parent, child and a professional.  Knowing that one person wants to stay with the family throughout a process, remain engaged and put the child/young person in the centre of the focus/therapy, may not be commonplace, but it has been reported as the most important and helpful of experiences.

What do you think would make the biggest difference to children’s lives from a mental health perspective?

When I posted this question in the Parents Voices in Wales support group, my phone buzzed immediately from response. It’s an answer I had already predicted.  Prevention.  Sounds very simple as a three syllable word but the context is far more complex. It may be rude to answer a question with a question but I am a fan of scrutiny, it is part of the territory of having a child with additional needs!  So, how can anyone prevent a child having mental health issues?  The answer that nobody wants to hear is – we can’t.  I don’t think we can ever totally prevent poor mental health but the biggest difference that can be made is ‘early help’ – quite simply, a prevention of later crisis.  We should talk about the impact of crisis though in order that the biggest difference to be understood.

Not all parents/carers readily know what mental health support their child/young person needs and certainly not if a deterioration in their mental health is insidious. When a child does hit crisis it is the most frightening experience for everyone.  Parents/carers feel utterly helpless and panic stricken.  It is shocking to realise you are not equipped to help your child, that you didn’t know they could be so poorly and that you don’t know if this is the worst of it or, God forbid, not. You are a candle in the wind, trying to grasp at any hope of solution. Where once you perhaps chose not to discuss your child’s issues with other parents, now you reach out to everyone.  There is no pride in desperation.  You’ll take any advice, recommendation or resource from any person willing to listen or help, because your child’s pain is your pain, its overwhelming and there is no time to lose.

Time changes in crisis, it stands still for the child like they are frozen in time, not developing nor really functioning.  For the parent/carer, an hour feels like a week and a week feels like a year.  An appointment with the GP to obtain an appointment with CAMHS, which may offer a 28 week waiting time, feels too long to bear and yet there is no other option.  So we read up on EMDR, CBT, DBT and become fluent in acronyms, calming apps, nutritional supplements, mindfulness, breathing techniques, alternative therapies and realise when all websites are exhausted that we are still not equipped nor skilled to decide on an intervention and will still have to wait for the appointment.  A long painful wait which impacts on the well-being of the whole family.

There is a saying that a parent is only as happy as their least happy child – it’s true.  Poor mental health of a child/young person seems as contagious as COVID.  Parent/carer mental health deteriorates alongside their child, which is not helpful when you need to think clearly and be on the ball to spot another change in behaviour.  You cannot surrender to the strain because there are other family members to care for, there is work to be done and someone you love deeply is desperately sad, possibly harming themselves, talking about wanting to die, or not talking at all. 100% of parents in our group reported that their mental health deteriorated as a result of their child’s poor mental health.

Who knew that when your child reached crisis, the ripple effect could be so damaging?  You had no idea your own mental health was so delicate, that the impact on siblings would be so enormous, that your child/young person’s trust of the school and possibly every adult had diminished because they had been brave and patient for far too long, that they may refuse to leave the house/attend school/speak to anyone, that you may have to reduce your working hours or give up employment to look after them because they cannot be left alone.  Many of our parents have had a drop in income because they are caring for a child with poor mental health.  Is anyone adding the possible ACE’s for this child/young person already in crisis yet?

It is commonly reported that parents had repeatedly raised concerns with education or other services but that no intervention was required because the issues were not considered severe enough ie the child wasn’t failing in school enough, their BMI wasn’t low enough, they hadn’t been violent enough or their mental health just was not bad enough. Some report that professionals stated it was an outside school/other service issue and told parents/carers it did not warrant further investigation/intervention.  This is where an early help needs led approach would make the biggest difference to so many children and young people.

It is wonderful that we have specialist services available should children/young people hit crisis, but with early help programmes/interventions, suffering from extreme emotional distress (and possible further ACE’s) could be avoided for the majority.  If education, health and social services really talked to parents, worked as a team with other agencies, without hierarchy or barriers, and understood that parental concerns and behaviours of their child was merely a language to be understood, this would make the biggest difference.

If you knew then what you know now about how services work what difference would it have made?

This is a poignant but important question to answer because it’s based on that old tool of torture that parents/carers frequently torment themselves with, hindsight.

All parents/carers like to pretend that we would have done things differently if we had our time again, that we would have been more patient, been more ‘Mary Poppins’ (sorry no male equivalent) and been the perfect home educator and then perhaps our children/young people wouldn’t have struggled with their mental health.  Even if they did struggle we would have shouted louder at services, demanded more and effectively wrapped this horrible mess up in a matter of weeks.  The truth, however, is we would do it the same way again.  Parent/carer guilt is the by product of hindsight.  It is very unhelpful to our own emotional health and a pointless exercise unless you were to use it, for example, to evaluate a process/service provision and being intent on making change.  This is exactly what the Mind over Matter report has done and changed the focus of our parent group from wanting to change mental health services to wanting early help for the emotional well-being of our children/young people based on a whole school approach that included the voices of parents.

Sadly, our children/young people were not able to experience early help, so parents/carers answered this question with some anger and from a variety of perspectives.  Some feel they would have requested to see a youth worker immediately had they known and understood their role, instead of waiting weeks for a CAMHS appointment and allowing their child/young person to suffer needlessly.  Why were they not told about youth workers in the school/community? Why did they not know that schools had mental health champions or programmes in-house? Why was this information not readily shared with parents on joining the school? Why wasn’t support or signposting to support advertised on the school/other services websites?

Parents/carers discovered that their child had to hit crisis first before anyone would listen.  After months of GP visits and mental health appointments they now realise all they needed was someone to know how to reach their child and connect.  Someone who could actively listen, empathise, understand and give support strategies to the child/young person and/or parents/carers.

Some parents feel that their child/young person’s experience of mental health services was more damaging than helpful, as they disagreed with the prescribing of medication or that the therapy was not neuro-diversity centred and talking therapies were not always the best pitch when a child/young person was not communicating at home let alone in a hospital setting to a stranger.

Parents/carers report feeling a disconnect between services with education in the centre, being unaware of support for children/young people outside of their own ELSA programme and who are reluctant to refer onto other services because of the complexity of the referral process and tell families to contact services themselves.  Relationship break down between families and schools is often reported because the parents are frustrated and angry at their child/young person being let down, when in reality the education framework is not equipped to help their child and meet all their needs.

So what do we know now?  That some children/young people do require specialist mental health services but these are in the minority. We know that services are currently disconnected, working in isolation but really need to join and collaborate.  We know that waiting for months on a waiting list is damaging, that in reality all our children/young people needed was to be heard early on, their needs understood and supported, to have someone who built a relationship, showed empathy, made a real connection and worked with families advising parents on support strategies.  This person could have be a youth worker, social worker, school nurse, teacher or TA but all trained in additional needs and mental health.  This is when we ditch the guilt and hindsight becomes a vision of hope.

If you had a magic wand what would you do on behalf of parent’s and children in your group?

Now this feels like asking a child to write their Christmas list! I intended to be shamelessly indulgent, pretend there were no monetary or political constraints and possibly run out of ink and paper talking about re-framing support, but that has essentially been done above. I have to be true to my first thought on reading this question and that wish would be to end suicide.

I would wish that all those beautiful children and young people lost to suicide were returned safely to their loving families and homes. I would wish that there had been an open door, accessible at all times so families had received support at beginning of their child’s struggle.  Knowing that real support was there would have brought hope for tomorrow, so their children would not even think about the need to leave.

Ending suicide would mean that even if a child were struggling with their mental health parents/carers and the child would be safe in their  circumstance knowing this would be the worst of it and they would have time when seeking help.

Ending suicide would be the ultimate wish because from that point of crisis, services and families could work backwards together and journey with the child/young person supporting them back to where they belong – at home and truly happy.

This may be a wish, but is it an impossibility?  I think not.

Parent’s group to Clinical Psychologist:

Why does the quality of mental health support differ between schools and services (Councils and Health Boards). Why are there discrepancies and what can be done to amend this?

I am delighted to start with this question as it get’s to the heart of my passion: the need to move towards a whole system approach to mental health and well-being. Historically whenever mental health services are in the spotlight the focus is usually on specialist services; and traditional clinic-based models of intervention. However, children’s mental health and well-being needs to be far broader than just this; and indeed demand on these specialist resources is very dependent on what else is available to families along the way. A whole system approach, as put forward so helpfully in Mind Over Matter, means recognising the mental health and well-being work that goes on across all settings and agencies from early years, to schools, to youth work, to social care, to sports and leisure; and supporting front line staff and volunteers to feel confident and competent; ensuring they have quick and easy access to expertise when they need it.

It also means offering children and families choices – what is going to work best for them at a particular point in time. This does mean a culture shift away from the expectation that specialist services hold all the answers towards a recognition that what happens day to day in the relationships with trusted adults is often the thing that makes the biggest difference to a young person. It is also important to say that there will always be some variation in how local services are organised and delivered. Having worked in Gwent for many years there are five boroughs served by one Health Board and they all have very different populations and communities. We need a national framework that grows local services according to local need; but is also guided by best practice, the available evidence, and an openness to innovation and learning from other areas; and of course, children, young people and parents themselves.

Can every school really connect with every child and provide bespoke support because isn’t awareness/empathy considered more of a personality trait than a learned skill?

Another great question and one I am really pleased to have an opportunity to share some thoughts on. Awareness is something that we can all benefit from and one of my hopes is to identify the core training needs that all front-line professionals who work with children and families would benefit from. An obvious starting point is a children’s rights-based approach; but core skills like an insight into child development, attachment and the impact of trauma and adversity feel equally important and I do believe these things will make a difference and help to shift the lens that childrens emotional worlds are viewed through. More vulnerable groups, for example neuro-diverse or from minority backgrounds, would also benefit from a special focus to empower all settings to feel equipped to support their unique and additional needs.

I also think you make a very important point about personality or temperament; and in particular in respect of teachers as this is something that rarely gets discussed. My position is that every teacher was a child once, and they entered into the profession for a variety of important and valid reasons. For some, it may be a passion to nurture and develop the potential of children, for others it may be the passion for their subject and for others it may be because a teacher had a profound impact on them when they were growing up. Children and young people spot a mile off when teachers are being ‘fake’ and a whole school approach is as much about supporting teachers to be themselves, as it is about supporting this for children and young people. Empathy is, of course, an important quality but some people find this much easier than others. When it comes to supporting mental health and well-being having someone who spots your potential, or who brings a subject alive, or who shares an interest, or who offers structure and clear expectations, or a shared sense of humour among many other things are all important ingredients. Schools are made up of individuals who between them need to provide all of these things collectively. Young people are brilliant at knowing who they need to go to for what.

How do I teach my child from a young age to look after his/her mental health? What do I tell him/her to look out for, how can parents/carers be proactive about CYP mental health? Shouldn’t we be trained too?

Brilliant question and I am not sure that I can do it justice in a couple of paragraphs!! The first thing to say is that I do believe the more information and open conversations about mental health there are the better. Sharing this blog during Mental Health Awareness Week is just one example and there is now so much more that is readily available. Again, digital technology has brought this to the fore, and Covid 19 has ratcheted it up another notch. The key message is to not underestimate the power of the little things, the building blocks of well-being like a safe and secure home, a healthy diet, sleep, opportunities to play and learn, friendships and a sense of belonging. Having said that, as someone who has been steeped in mental health for nearly 30 years it feels important to acknowledge that I still flounder when it comes to my own children. This is a complex business where what we know interacts with our own emotional responses and experiences, and our resources and resilience as it ebbs and flows! I often turn to my husband and say ‘what shall we do?’ He is an engineer and inhabits a very different world. Occasionally he dares to answer, ‘isn’t this your domain?’

That said, I do feel in a very privileged position to have gained some insight over the years about the most important things, even though I inevitably wobble. The first is to walk the talk. Children learn by what they see so if I don’t look after my own mental health, talk openly about how I am feeling, notice when I am stressed and need to slow down then no amount of telling my children will make a difference. I have also learnt the importance of being rather than doing. Sitting with children and experiencing their pain alongside them is far more powerful than trying to find a solution and ‘fix’ the problem – excruciatingly tempting as this may be. Finally, and most importantly, your relationship with your child is the key to mental health and well-being. This will breakdown and ‘rupture’ all the time – that is normal. It is the repair that makes the biggest difference – reaching out, saying sorry, letting things go so you can start again, being the bigger, wiser person are the things that really make a difference. That is why you have to look after your own mental health and well-being first. The aeroplane metaphor is so helpful at making this point – you have to put your own oxygen mask on first before you put your child’s on despite this feeling acutely counter-intuitive.

Why are there discrepancies in professional opinion/diagnosis between psychologists/mental health experts and why do schools not always accept these opinions and refuse to give help? Why do parents have to fight for support?

This is such a big and important question. My perspective is that there are so many contributing and interacting factors to a child’s mental health and well-being that we need services that take into account this complexity. Unfortunately, services tend to be arranged in what we call silos – seeing things from a particular or dominant perspective; and reinforcing this perspective as a result of the organisations they sit in. For example, mental health services tend to sit in health, and health inevitably organises things in a more medicalised way. The reality is that this is just one aspect of mental health; which is impacted by relationships, experiences and environments. Most importantly, the solutions to mental health are often found in these everyday relationships, experiences and environments; and an overly medically orientated service model risks underestimating this often untapped potential.

That is a complicated way of saying we need to move to a model that draws on a range of options and is much more bespoke to fit the unique needs of an individual child and their family – taking into account the strengths in their support networks and communities to bring about change. This shift is about moving from single agency or professionally led services to needs led services – the all important question being what would this child and family benefit most from now? One way of taking the ‘fight’ that you describe out of this is a single point of access. A one stop shop or no wrong door model where all services that offer mental health and well-being support sit in one place. For some families the next step will be the traditional clinic based model, for others this will never fit for them, and they would benefit more from a community based approach. Consistently we hear from children, young people and parents that it has less to do with the profession or even the approach but more about the relationship. This is the most important vehicle for change; and a service model that supports and recognises this has to be a priority. That is not to underestimate the value of professional expertise, but to ‘flip the script’, and use this expertise to support every day relationships, therefore maximising their therapeutic potential.

After all Ceri, as you so powerfully articulate in your answers to my questions it’s the little things that make the biggest difference regardless of where we are on a journey. This e-mail exchange has made a very big difference to mine.

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