Doug and Ben Morris share thoughts on the hopes and potential for the new NICE Guideline and Quality Standard – and show what needs to happen to make the guideline a reality for children, young people and families.
Doug is a parent trustee for Together for Short Lives and South West regional representative for the National Network of Parent Carer Forums. Doug lives in Swindon with his partner Sandra and their two children Ben and Emily.
Ben Morris, who was born in November 2000, has Spinal Muscular Atrophy (SMA) and consequently has complex health needs. SMA is a neuromuscular condition which causes weakness to the muscles and is considered to be a life-limiting condition. Ben took part in the NICE Guideline focus group in Bristol last year.
Getting the diagnosis that your child has a life-shortening or life-limiting condition which may result in an early death is challenging at best, devastating and heart breaking at worst. Depending upon the nature of the illness parents have varying amounts of time to come to terms with the diagnosis and as a consequence only manage to plan for very short, short or medium-term scenarios, if planning is possible at all. Very rarely is it possible to think long term; there is usually just too much to do.
Whenever there is time to plan between bouts of illness or intensive periods of intervention, there is no doubt that “getting your head round stuff” helps get rid of the clutter, clear the mind, get organised and relieve stress that builds up when parents become completely immersed in the lives (potentially short lives) of their child.
Clearly the team that supports the family is critical to how good the quality of life of the child and family is. Planning for the inevitable can be hard to contemplate or address especially if the time-frames are unknown or if it is not possible to acknowledge that it may occur at all. Nevertheless, when end of life does start to appear on the radar it is better to be prepared than not. If there is good preparation then the experience could be made that much easier, whilst recognising that it is likely to be no less distressing.
The importance of a well informed and understanding team working with the family is key. People who are working with the family or in their orbit need to be aware of the issues and be sympathetic about how the family work to support their child and engage with others. The family in turn look to others to help move forward and where necessary plan for key milestones and events.
Although challenging to discuss and implement, there is no doubt that an end of life plan can be helpful when thinking the unthinkable. Not knowing where or how to begin can often hold the conversation back. Until now there have been numerous publications citing “good practice” and “guidance” on what needs to be done but finally there is now a quality standard which should help everyone reach more positive outcomes. Now with the new “End of life care for infants, children and young people, NICE quality standard” we hope that by working together everyone will have an effective structure to work to, enabling parents to be more assured that everyone will be looked after in the way they want when the time arrives.
The key must be that all agencies involved in the support and care of a child and its family must be focussed and know what to do, when to do it and to what extent. Minimising pain and suffering whilst maintaining good communication and effective support without abstaining or abdicating responsibility. Parents need time to focus on what is happening in the here and now, they need to rely on others to do their jobs but most importantly to know what those jobs are.
In the aftermath parents are likely to need support but also need to know where that support will come from. All of this can be built into a plan which everyone knows will work and be of sufficient good quality to be effective.
We hope that the new NICE quality standard is adopted quickly and efficiently by agencies across the country so that those families who become affected by it are properly supported.