Let's get it clear Grace image
A joystick directly in front of the user is arguably more beneficial. Picture courtesy of Dragonmobility

If there is an aspect of a child’s development that has been impaired, then the earlier this can be corrected or mitigated, the less harmful impact it will have later on for that child. In some cases there may only be a ‘window in time’ to instigate a successful intervention, and in many cases the later the intervention the more significant it may need to be. The concept of early intervention is nearly equally as important for adults as it is for children. It falls within the remit of Do No Harm, where prevention is better than cure.

If a log fire in your house spits out a spark onto your hearth, you put it out straightaway and adjust the fireguard. This early intervention by appropriate actions, and appropriate equipment, should avoid the house burning down. However, in the absence of this early intervention and the house were subsequentky to burn down, it’s still possible to rebuild the house.

With human beings it’s not so easy! The absence of an appropriate early intervention means the effects are frequently not fully reversible. This can lead not only to short term issues, but also long term quality of life, physical, cognitive, and behavioural consequences. These consequences are typically more difficult, time-consuming and expensive to manage, even if they turn out to be reversible to any extent. Prevention, as ever, is better than cure.

Early intervention in children

Early intervention in children is particularly important since there are distinct sequential stages in development from the day we are born. These stages set the scene for the next stage of development, and for many stages, we never get that stage back fully, if at all, if missed.

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An example of the significance of stage development is around physical development: mobility in the first two years of life is critical in our development of spatial awareness.

Later on, at school, the use of powered mobility versus use of a manual wheelchair, to get between classrooms can conserve energy that is better used towards the learning processes in the classroom. Access to early mobility is also important for permitting social interactions, being able to play, learning to be naughty, and ultimately taking responsibility for one’s own actions.

On the physical side, across the 24 hours of a day, each aspect needs to be considered to ensure that a child’s skeletal development is being addressed, whether at night when the body is in the same position for a long time, or during the day when much time will be spent seated. Periods of standing are also important, not only for physical development, but also for social interaction eye to eye.

It’s often the small things that can make a difference! For example, why do most powered wheelchairs have their joysticks placed at the end of the arm support? Probably because it’s easiest for the manufacturer. However, the use of a joystick requires a degree of fine motor control. How easy do you find it to write if you place your paper over to your side?

Just as you usually have the pad, or computer keyboard, directly in front of you, ideally you should place the joystick there. Not only does this make this easier for the user, but also you are not introducing the potential Harm of the person developing a scoliosis from repeatedly leaning sideways to access the joystick.

Importantly, children do not think of themselves as being ‘disabled’. We have a responsibility towards enabling, and ensuring that there is an absolute minimum of ‘learned helplessness’.

Who should be involved?

For youngsters, ideally there should be coordinated interventions between parents, school, and therapists, and ideally each should have the same level of information and training on the interventions – and not least the parents as they have the most exposure to the child over 24 hours, in most cases. This is very much the approach of the MOVE Europe programme, which is a collaborative framework that puts the disabled young person and their family at the centre of everything, and unites all of the individuals who support them to work towards the same meaningful goals.

COVID-19 damage

The last couple of years have exacerbated the challenges of avoiding the Harms caused by a delay in intervention, due to the lack of access to: normal life and interactions, normal learning activities, and standard access to medical professionals where needed. The Disabled Children’s Partnership (DCP) report ‘Then there was silence’ published in September this year reveals some very worrying statistics, as follows…

Despite lockdown restriction easing:

  • 55% of parents experienced the same level or a worsening of their isolation
  • 9 in 10 disabled children were socially isolated
  • three quarters (76%) seeing no improvement over the course of 2021

Compared with pre-pandemic service levels, throughout the pandemic there was:

  • A 60% increase in referrals to paediatric emergency mental health services
  • Paediatric Pain Management clinics were reduced by 84%
  • 67% of Trusts (FOI responses) completed fewer Physiotherapy assessments within 13 weeks target
  • Almost half of Trusts completed fewer OT and SALT assessments
  • Less than 4 in 10 children with EHCPs attended school during lockdown between January and March 2021

71% of parents said that their child’s progress regressed due to service delays. Compared with pre-pandemic service levels:

  • Over 40% reduction in Community Paediatric activity
  • 40% reduction in paediatric surgery
  • 63% of Local Authorities received fewer EHCP referrals than pre-pandemic
  • 70% of Local Authorities completed fewer EHCP decisions to assess within the 6-week timeframe
  • 6 in 10 Local Authorities not completing section 17 requests within timeframe

The overall result is that, not only have normal interventions been absent or delayed, but also that the interventions have now increased in the complexity of the solution required.

Steps towards improvement

As outlined above, there is currently a large backlog of ‘cases’ awaiting professional attention, a challenge that is exacerbated by a shortage of available staff. The charity sector is trying to fill some of the gap, and the commercial sector has been offering its services to complement the assessment needs.

Huge challenges exist including widespread feelings of burn out and the enormous pile of open ‘urgent’ cases: the public sector is finding it difficult to find the time or energy to look at alternative routes to service delivery that might help to provide some relief. Help is available: do pick up the phone and ask us! Many companies in the commercial sector in addition to helping with assessments, also offer free training to parents, school staff, and therapists alike.

You may also like to tune into the recent webinar where Stephen Kingdom of DCP, Charlotte Peck of MOVE Europe, and Holly Jenkins of Jiraffe, discuss the importance of early intervention in paediatric care as part of the Do No Harm – Know your power campaign.


The Move Programme

The MOVE Programme is an activity-based practice that enables disabled young people to gain independent movement. It uses the combined approach of education, therapy, and family knowledge to teach the skills of sitting, standing, walking, and transitioning between. The aim of the MOVE Programme is to offer these movement opportunities to disabled people, opening up and transforming the world around them and creating an accessible, interesting, and educational world full of opportunity and choice.

The programme’s central philosophy is that movement is the foundation for learning. In early development, children learn about their environment and gain skills to navigate the world by moving, exploring, and practicing repeatedly. A disabled child who uses assistive equipment and relies on others for much of their movement is generally provided fewer opportunities to move and learn independently. The MOVE Programme ensures that disabled young people are provided these vital opportunities to develop their mobility and independence.

www.enhamtrust.org.uk


The Disabled Children’s Partnership (DCP)

The DCP is a major coalition of more than 90 organisations campaigning for improved health and social care for disabled children, young people, and their families. It provides a platform for their voices, and challenge the injustices that affect them.

disabledchildrenspartnership.org.uk


Lets get it clear Barend ter Haar headshot

Further items can be found at www.beshealthcare.net. If you are interested in receiving further information on the topic, please contact barend@beshealthcare.net.

Dr Barend ter Haar has been involved in seating and mobility for over 30 years, including lecturing internationally and developing international seating standards.


Click to read more from the ‘Let’s get it clear’ series from Dr Barend ter Haar

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