Speak Up For Communication

With absolutely no mention of decorating downstairs toilets this week, I am back talking about the serious matter of children’s speech, language and communication needs – SLCN.

Last year, I wrote this post – Ensuring Children’s Speech and Language Needs Are Met: A Call to Action– about The Bercow10 report – a damning reflection of the state of speech and language therapy services in the UK and the enormity of unmet need. RCSLT and ICAN last week began a new campaign highlighting the changes that have been successfully brought about in the year since Bercow10 and asked for renewed efforts to speak up for SLCN.

Of the 47 recommendations made in last year’s report, 17 have already been fully actioned, which is a promising start.

You can see some of the key successes here:

I mentioned the petition begun by @GillianRudd at the end of last year’s blog post. Following an incredible effort, this was successful, gaining 11,622 signatures and leading to a debate in Parliament. The government have stated they are committed to meeting the needs of children with SLCN, and Teresa May herself has committed to change during Prime minister’s question time.

However, there is widespread agreement within the speech and language therapy profession that this is not enough. Budget cuts have decimated speech and language services up and down the country. Yesterday, there was an article in the Daily Mirror about children languishing on waiting lists for as long as a year before getting any sort of meaningful help (see Mirror Article). The NHS department I used to call my professional home no longer exists – its contract having been lost to a private provider – and those children I work with in independent practice talk of long waits, minimal input and quick discharge in their NHS services. I never thought I would have to end up working privately to be able to give children the quality therapy they deserve and part of me is still saddened by it, not least because private services are out of reach for so many vulnerable children who need them.

Pressure on NHS speech and language therapy departments has been growing over a number of years, with an increase in need and a decrease in funding. Clinicians are under pressure to move children through services as quickly as possible and to be inventive with the budgets they do have. The department I worked for, put a heavy emphasis on others, such as speech and language therapy assistants and teaching assistants, carrying out therapy with children. This was part of being ‘lean’ and making savings but ultimately I think it has devalued the work and knowledge of speech and language therapists and contributed to the demise of services. We also worked to an ‘episodes of care’ model, in which children were seen for a block of therapy to target a specific aim and then discharged, with the plan for them to come back again when they needed more. Although this was effective for some children – the ones whose parents or school would make sure they did come back – I’m sure it put vulnerable children with poorer support networks at increased risk. Although the service was designed for children to come in and out of, I think it gave the message to some people that nothing else could be offered and that children’s needs had resolved, where they hadn’t, and were unlikely to for their lifetime. In trying to be frugal, I suspect some services have inadvertently misrepresented the severity and long-term nature of some SLCNs as well as lessening children’s chances of getting the additional support they needed at school (funding is difficult to justify if a child isn’t actually under any external services).

As it stands, Little Bear has also been discharged from speech and language therapy. He too could be re-referred but that would require energy I’m not sure I have. I would need to prove his needs were severe enough to get through referral criteria and no doubt start back at the beginning of the initial assessment to waiting list process again, which took a year last time. He clearly does have ongoing needs – he has Developmental Language Disorder – but proving the daily impact on him would be difficult now his needs are more subtle. Like any parent of a child with SEND, I am already pretty stretched with managing behaviour, seeking funding, trying to get school to understand his needs etc. etc. I’m not sure that I should have to jump through hoop after hoop to get him the help he needs. Yet I would have to. And so too do parents of children with SLCN in all corners of our country.

For me, it has been far easier to create a speech and language therapy programme for Little Bear myself and to train his TA to carry it out myself. Clearly this is a perk that other parents cannot rely on.

The majority of clinicians want what’s best for children and many are deeply frustrated by the limits of the services in which they work. In an unprecedented move, RCSLT and ICAN wrote an open letter to government last week, asking for SLCN to be given the attention it deserves. It was countersigned by 60 organisations, ranging from Autism charities to fostering and adoption charities, who share a deep concern about the future of children with communication difficulties. You can find it here: Open Letter

Five key areas requiring change have been identified as priorities for action and are the five areas the open letter asked the government to act upon. They are:

Joint commissioning of Services – as SLCN impacts upon children’s emotional wellbeing, education, future employability and likelihood of involvement with the criminal justice system, a joined up approach to meeting need would be ideal. It is hoped that this would also help to iron out the postcode lottery which currently exists in the provision of speech and language therapy services.

Long-term support for SLCN – although support has improved in the early years, support for the 10% of older children and teenagers who will have ongoing needs continues to be poor.

Professional Development – there is a pressing need for all teachers and those working in the field of childhood mental health to be aware of SLCN and the many ways it might present. Professionals need to be able to identify SLCN and be aware of clear pathways to support.

Incentivising schools – budget cuts are impacting on education settings too. In these times of reduced funding and fewer EHCPs, it is imperative that schools are supported from the top down to identify and meet SLCN. The anniversary report asks for provision for SLCN to be considered during Ofsted inspections.

Supporting vulnerable groups – as children who have been excluded from school, those in Care, those with mental health difficulties and those who are involved with youth justice are more likely to have SLCN and are more at risk of their needs going unidentified, improvements need to be made to the support available for these groups as a priority.

This is the main area where I have tried to make an impact – providing training workshops for adopters and prospective adopters to arm them with knowledge of communication development; how to identify red flags and what to do to best support SCLN at home. Myself and another speech and language therapist adopter have also written a social communication group specifically for children with trauma backgrounds which is currently being advertised. It is good to see that work is beginning to happen with children who have experienced, or still are experiencing the Care System in other areas, and training for speech and language therapists in this previously neglected area is becoming more common too.

There are pockets of hope but in short, our work is far from done. RCSLT and ICAN are asking for our ongoing activism. We need to continue speaking up for communication and for children with speech, language and communication needs. We cannot stand by and do nothing.

If you would like to help, here are some things you can do:

• Use the hashtags #SpeakUpForCommunication and #SpeakUpForSLCN on social media
• Make a Vox Pop clip to pledge your commitment to speaking up for SLCN and share on social media (advice here: Vox Pop Guidance ) . I’m still pondering how I can get involved with this anonymously…
• Visit the website here: www.bercow10yearson.com where you can download speech bubbles and get tips on other ways to join in
• Write to your MP, or tweet them. Are they speaking up for communication? They are our representatives in Parliament – we need them to know about SLCN and Bercow10. We need them to speak up most of all.
• Retweet and share this blog
• Tell anyone who will listen about SLCN

Perhaps if we all shout loud enough, real change will happen.

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Talking is Crucial

We’ve had a flurry of activity here over the past week or so, with various people visiting us and several sleeping over at different points. Each person has come with their own story, most of which have made our day to day challenges pale into insignificance. Their stories are not mine to share of course, so I won’t, but reflecting on it all has left a few thoughts whirling about.

Firstly, talking is crucial. It is crucial in a very basic form: the form where it allows you to have your needs met. We know this as a family, having adopted Little Bear at a point when he couldn’t communicate well and there was more he couldn’t tell us than he could. We know it but sometimes a situation arises that reminds you. One of our guests was a family friend who happens to have learning difficulties. Her speech and language skills are very limited and even in the short time she stayed, we could see a snapshot of the challenges she faces every day. She couldn’t always tell us what she wanted to eat; she couldn’t tell us what she wanted to watch on TV; she couldn’t tell us why she did or didn’t want to do certain things. It must be incredibly frustrating, especially as she can understand much more than she can express (you can’t help but notice these things as a speech and language therapist and incidentally, be a little desperate to solve them).

I certainly feel as though life would be different for her were she able to say everything she is capable of, whether that was verbally or in another way. I also felt it must have been really scary for her, to come and stay somewhere she hadn’t stayed before, knowing she might not be able to get all her needs/ wants met. Imagine how vulnerable that would make you feel. I suppose some people might think that due to her learning difficulties she doesn’t think about these things but I know she knows her communication is different. I think she’s embarrassed about it and is certainly more reticent if there are a lot of people around or people she doesn’t know well. More words began to sneak out as she settled but there was still a huge disparity between the ones she comprehended and those she was able to verbalise at the point she wanted to say them.

I can’t help but think of the what-ifs. What if she’d had more/better speech and language therapy when she was younger? What if she did now? Is it too late? Is it ever too late? Should something alternative have been put in place? What should it be? Why wasn’t more offered? Did people think it was ok because of her learning needs? What if a young child presenting as she did when she was young was under speech and language therapy now? What potential would be seen in them? Would outcomes be different? I like to think so but given what we know of speech and language therapy services since Bercow10 (see Ensuring Children’s Speech and Language Needs Are Met: A Call to Action) I wonder…

Surely we should be striving for the most a person can do, whoever they are, instead of settling for the least we can get away with.

On another note, it was interesting to observe Little Bear with this person. Firstly it really highlighted the progress he has made with his communication. He is a competent communicator now; he can say everything he wants to say and mostly with clarity. It’s not to say that his speech and language skills are perfect, because they are not, but in general, if you popped him into a group of people he didn’t know well, he’d be ok communication-wise. I don’t mean to draw a comparison, because that’s wholly inappropriate, but the realisation that Little Bear has reached that point was a bit of a surprise. I worried for so long that he wouldn’t reach it that this little revelation is very welcome.

Along with this revelation came an uncomfortable truth. Little Bear is now able to use his communication skills for both positive and negative purposes and though he was mostly great with the lady I’m talking about, there was one point when he was tired and cottoned on to the fact that he was verbally wilier and could use his words to wind her up. It was weird to observe because I have seen it so many times directed towards Little Bear, from wilier peers. I tried to intervene to stop him as I could tell he was upsetting her but as he was on that trajectory where he couldn’t stop himself he carried on regardless and I decided to take him out of the situation and up to bed.

The incident had a weird, double-edged irony: I was sad to observe it and sad for the lady’s communicative limitations whilst being simultaneously disappointed that Little Bear would do it yet also noting it was indicative of his developmental progression. We talked afterwards about it and Little Bear could remember times when he wasn’t able to say what he wanted and times when he had to resort to other methods of getting his messages across, such as hitting out and I think he understood why he shouldn’t have exploited her communication difficulties as he had. He was sorry afterwards.

Although it feels like an important moment to reflect on, I don’t want to make it more significant than it was. Overall both boys were fabulous and just took all the issues of the past week in their stride. They are both very empathetic and I’m extremely proud of the kind, understanding, non-judgemental young men they are becoming.

At one point the lady I keep talking about gave Little Bear a bear hug that was a little squeezier than he might have liked. Initially he got a bit upset and took himself out of the room. When I went to him he started with the usual “I hate said person/ she hurt me/ she did it on purpose/ I hate her now” rhetoric but we had a little chat and I left him to calm down. The next thing I knew he was coming over to her, offering another hug but asking her to be more gentle. Again, I could see the progress he had made. Previously he wouldn’t have been able to put his communication skills to such good effect, would not have calmed so quickly and would have given said person a wide birth/cold shoulder for a lengthy period. I think the approach he took showed real maturity and I felt a glow of pride.

Our week also taught me that it is not just talking at the fundamental level of getting our most basic needs met that is crucial. Talking is also crucial to keeping us mentally well. Other guests we had were carrying other issues and when I say carrying them, I mean lugging about a massive sack of stress, hurt and grief wherever they go. The difference, I think, between that massive sack dragging you further down or you being able to get on with your life despite it, seems to be your ability to talk about it. The person who internalises or who does not have an available/ safe outlet for their worries and feelings is in danger. I know that sounds a little dramatic but I genuinely believe it’s true. There is a lot on social media at the moment about suicide prevention and all the statistics around the issue. It’s worrying.

Talking helps people take things out of their massive sack. Issues can become less, opinions can be sought, advice given, soothing words or hugs dispensed. Talking doesn’t make things go away but sometimes it can give perspective, space or a fresh view point. Things tend to multiply or expand or metastasise when left in the sack. Talking can curb things, keep them in check, prevent them taking on a life of their own.

On face value, one of our guests maybe seemed to have a lot of issues. They told me a lot of things. They seem to have a lot to worry about. However, I know that another of our guests, who said nothing, also has a huge sack of issues. It’s the one who said nothing that worries me. The one who talks spills the contents of their sack at regular opportunities and I’m glad they do. They have hard things to cope with but they’ll be ok. The other one, the one who doesn’t talk, I worry about them. I don’t know if they have that safe outlet, that trusted person, that someone who will just listen. I don’t know and I think their lack of being able to talk, even though they have the communication skills they need, is a red flag. I suspect it is not being viewed as such by people around them – they do not appear upset, they aren’t saying upset things ergo they must be fine.

Whilst talking is crucial, so is listening and both are required for mental wellness. I know many people who think they are good at listening but few who genuinely are. The best kind of listening is not just done with the ears; it is about observation, reading between the lines, hearing the unsaid. It is the ability, or maybe the willingness, to see beyond what is presented. I suppose it is about connection. I suspect not everyone thinks they have the time.

I also suspect that people don’t always think the same level of observation and alertness to emotional wellbeing is required for children; that somehow children are just fine. They aren’t and the ways they manage, or don’t manage, their feelings and worries and grief will follow them into adulthood and shape their future selves. This whole talking thing needs to start as soon as possible.

Sometimes I wonder if I’ve got too wrapped up in adoption and the issues it brings. None of the people who have been here this week are care-experienced. They are not adopted yet they have experienced trauma. I guess I’ve been reminded that we don’t know what sacks people might be lugging with them; these cumbersome burdens are often invisible. The emphasis is on us, as fellow human beings, to be alert, to look beyond appearances, to actively observe and skip the snap- judgements. Talking is crucial but so is hearing the unspoken.

It has been a funny old week.

 

 

 

Ensuring Children’s Speech and Language Needs Are Met: A Call to Action

As most of you know I am a speech and language therapist and my son, Little Bear, has Developmental Language Disorder   (DLD) so it is no surprise that meeting children’s communication needs is kind of a big deal for me. A recent report has come out reviewing speech and language therapy services for children and the findings are a little damning. It is called Bercow10 as it is written by John Bercow (of MP and having-a-bit-of- a-naughty-wife fame) in partnership with ICAN and the RCSLT and is a follow up to the original Bercow report which was written 10 years ago. It is a very important document and I want to share some salient points with you. As many of my readers are involved with adoption in some way, I am going to focus in particular on the bits of the report that are relevant for looked after children, children with mental health needs and children who become involved with youth offending. However, this is something that EVERYBODY needs to know about so please don’t look away, even if you don’t have any obvious connections to the content.

The report begins with an important message: “The most fundamental life skill for children is the ability to communicate” but it goes on to say that “as a nation, we have yet to grasp the significance of this”. This certainly seems to be the case as there are more than 1.4 million children in the UK with speech, language or communication needs (SLCN) yet it is not something we really hear talked about and most people have never heard of DLD despite it being one of the most common disorders of childhood. We hear a lot about the ‘obesity epidemic’ as it has a physical impact on children and a financial impact on the country. Bercow says that SLCN has a developmental impact on children as well as a social and economic impact and should similarly be considered an issue of public health. Being as SLCN impacts upon a child’s education, social, emotional and mental health and their future life chances it is a much bigger issue than it is given credence for.

A good starting point is to raise awareness of SLCN and what that means and what it looks like. If you want to know more about how Little Bear has been impacted by his language difficulties, see these previous blog posts: Living with Speech and Language Difficulties, Communication Difficulties: Update

Children from disadvantaged backgrounds, whether that is due to social disadvantage or maltreatment, are disproportionately affected by SLCN: in some areas as many as 50% of children have language disorder and Looked After Children have poorer language on school entry compared to those who are not Looked After. Children considered high-risk for harm, such as those on a Child Protection Order face a higher risk of SLCN as do children who live with domestic violence. Across the care system as a whole, 63% of children have SLCN, compared to 10% in the non-care experienced population. This makes our most vulnerable children even more vulnerable to poor life outcomes. Children with SLCN in early years are twice as likely to develop social, emotional and behavioural difficulties and are at greater risk of depression or anxiety. Children with poor vocabularies are twice as likely to be unemployed as adults compared to those with age-appropriate language skills.

The statistics are pretty scary. What is also very worrying and makes my heart break a little is that many children’s difficulties are missed or misdiagnosed. Studies have shown that 81% of children with social, emotional or behavioural difficulties, including those with conduct disorder or ADHD have significant undiagnosed SLCN. If we extrapolate that a little, the picture seems even worse. These children, who cannot learn in school (because the curriculum is not accessible to them and teaching is not differentiated for them), often go on to engage is risky behaviours – drug-taking, crime etc. and unfortunately many will go on to find themselves in the youth justice system. Another study shows that 60% of children in the youth justice service have low language skills, often lower than an average 11 year old. Imagine having to be interviewed and appear in court when you cannot access classroom language let alone legal jargon. Many of these young people are then expected to engage with various programmes to aid with their rehabilitation. Statistics suggest that 40% of young people cannot access the content of these ‘verbally mediated interventions’ due to their language difficulties.

If children do not get their needs identified at any early stage and do not receive the therapy they require, the consequences can be dire. This is what Bercow means when he talks about social and economic impact. I think this particularly upsets me because had life been a little different for Little Bear, he could all too easily have fallen victim to this pattern. His behaviour did come before him and had we not been able to see beyond that and not recognised his DLD (and developmental trauma), things could have been very different. Before Little Bear was adopted at the age of 3 and a half, although there was a vague indication in his paperwork that he might have some language delay, he had not been formally assessed by a speech and language therapist. I was shocked at the severity of his communication needs the first time I met him and his language was later assessed as being more than 2 years delayed. I’m not quite sure what other signs would have been needed for a referral to have been triggered but he was certainly at risk of falling through the cracks.

I think there are two key things here. Firstly, if a child is presenting with social, emotional or behavioural difficulties, they should have a speech and language assessment as a matter of course. Behaviour itself is a communication and people in general need to get much better at looking beyond it. The second thing is that other professionals need to become more knowledgeable about SLCN; teachers, health visitors, the police etc. all need to be aware of the ‘red flags’ and seek help to prevent life escalating away from vulnerable children.

The bleak picture I’m painting could possibly all come good if there were excellent speech and language therapy services available to meet need once children were referred. However Bercow is pretty damning about this too. There continues to be a post-code lottery when it comes to availability and quality of services: of all the 2500 respondents, only 15% felt services were available as necessary. More than 50% of people had waited longer than 6 months to receive the therapy they needed and 34% had waited more than a year. This is a statistic I can empathise with as we had to wait over 8 months for Little Bear to be seen for the first time and a year for therapy to begin (see A bit of a rant).

This isn’t good enough. I was lucky to have my professional knowledge to fall back on and could begin helping Little Bear from day one. However, most adopters or foster carers do not have that level of knowledge and couldn’t be expected to. A year is too long to wait for a child who has already been neglected and needs immediate support. Due to Little Bear’s behaviour, our adoption began at crisis point. Thankfully we were able to identify there was a communication element to his needs, as well as developmental trauma, and could begin to tackle it. As most adopters do not happen also to be speech therapists, they would be unlikely to be pre-armed with the knowledge and strategies required. The impact of not receiving support in a timely fashion could be catastrophic.

Our story does provide some good news though, thankfully. The thing is that when quality speech and language therapy is provided, it is extremely effective (see Speech Therapy Works). Despite starting pre-school at the level of a 16 month old across all areas of development, with communication being one of the most difficult areas for Little Bear, by the age of 6 his language levels had improved to within the expected range for his age. Admittedly he received a high level of input, both at home, in clinic and at school but that input was effective. Our story shows that as bleak as this situation seems to be, it doesn’t need to be hopeless. If change can be brought about, services can be improved and awareness can be raised, we can literally transform lives.

Bercow 10 doesn’t just highlight problems, it makes practical recommendations for change under the following headings: communication is crucial; a strategy for system change; an accessible and equitable service for all families; support that makes an impact; early identification and intervention are essential. You can read the full recommendations document here: Bercow10 recommendations

And if you are feeling very keen, you can read the whole report here (it’s really well written and a lot more accessible than I expected): Bercow10 whole report

What can you do to improve outcomes for children?

In order for change to happen, people need to know about the current situation. They need to know about Bercow 10 and its contents. @GillianRudd has begun a petition to bring discussion of Bercow10 to the government to ask them to ensure the implementation of the recommendations so that children’s communication needs can finally be met appropriately. 10,000 signatures are needed for the government to respond to the petition and 100,000 for it to be considered for debate in Parliament. You could help by signing the petition and asking one person you know to sign it too. Just follow this link: petition

Please share this post far and wide to get the message out there.

It is essential that schools, health visitors, psychologists, CAMHS services, doctors and the Police know about Bercow10. Could you share the link with your child’s school or other professional?

If you want to get even more involved than that, see the Calls to Action section of the website: Calls to Action 

Thank you very much in advance for signing petitions and sharing etc. Change has to happen.

 

 

*This post is based on my personal reading and interpretation of the Bercow10 report. If you want to know the sources of my statistics, please see the report.