Doug & Ben Educate Scientists and Researchers

Ben Morris, who has SMA Type 2, and his dad Doug went to Switzerland to talk to scientists and researchers about the impact SMA has on their lives.

In recent year’s parents, carers and young people have been increasingly engaged with public sector organisations and professionals, sharing their views and enlightening those who deliver services for disabled children and young people. The purpose of this engagement is to give service providers an insight into what it is like living with a disability and the issues that are faced on a daily basis. Hopefully this enables services to improve, meet the needs of each individual child and ensure their care and support is more effective.

With this in mind, Ben and Doug responded enthusiastically to a request from a pharmaceutical educational company who had been given the remit to put together a training day focussing on SMA for a large pharmaceutical company. The training day to be held in Switzerland was intended to be a rounded presentation which included input from a neurologist, an experienced practitioner in the field and a personal perspective from a family.

Doug writes: You may have seen various surveys and requests for information from researchers about the impact of SMA on our lives, but the opportunity to speak face-to-face to a group of researchers was something that could not be missed. This was our chance to inform those people, who could have a massive impact on our lives, what their work means to us and how important it is to fully understand how their work could change lives and why. So the planning commenced and after much anticipation off we flew to Switzerland.

The agenda for the day was for the neurologist and practitioner to give a medical and practical insight into SMA from a professional perspective. This would enable the delegates to understand some of the technical issues around what their work meant. However, we were asked to present a reality only those affected by SMA and their families can.

Our slot was just after lunch so we took the opportunity during the morning to scan the list of delegates and to our surprise we discovered that this was more than just a bunch of people from the research department who wanted to know about SMA. These people had flown in from all over the world: Europe; North and South America; Africa; the Far East; Australia and of course the UK. The pressure was on to get this as right as we could to make sure we got the message across for all of those children out there who need something to happen.

After the audience of 80 was well fed and content, scientists and researchers filtered into the room. We were warmly welcomed and introduced to the delegates then quickly got into our stride. The room listened intently as Ben explained what the different aspects of his life are like. He talked about life at home, at school, his social life and going into hospital. He talked about what support he needs on a daily basis in each of these settings and explained how little he could do without the support provided by his parents and by the vast array of services that are needed to support him. Ben also expressed his wish for some form of effective treatment or cure which would enable him to do some things for himself and thanked the audience for their efforts so far.

I then took over (with help from Ben) and discussed the many aspects of life supporting Ben.  I went all the way back 14 years ago when the diagnosis process commenced and then what happened when the nature of Ben’s condition was broken to Ben’s Mum and me.

We pointed out some statistics and that getting the diagnosiswas just the start. In the first two years following the diagnosiswe did the following:

As well as the emotional cost of the diagnosis we told the room about certain aspects of life which include:

  • Total practical management
  • Total personal care
  • Ben as a wheelchair user
  • Frequent chest infections
  • Ben’s gastrostomy
  • Spinal surgery

As a practical tale I was able to inform the audience how we have become experts in our role as Ben’s key workers, how we manage medicines, equipment, consumables, appointments, all within a backdrop of working with Ben depending on different aspect of his health. There is not a typical day, but four:

These aspects are all wrapped up in the Carer’s Journey of continuous meetings along a busy road:

When we had finished we felt assured that those listening truly understood why a treatment or cure for SMA is so important. Whilst there is a cost to find a solution, there is also a cost to physically support and manage a person affected by SMA. There is also a practical cost on the family and an emotional cost which also needs to be considered.

We hope that the time we spent was of some use to those in the room and we hope that they were able to return to their desks and laboratories with a clearer insight as to why they are doing what they do.

We look forward to hearing of some positive progress soon.