Pushing the Boundaries 2015 - Life beyond meningitis and septicaemia

Pushing the Boundaries 2015 was held in the beautiful county of Rutland on 28th October 2015, and was our third annual support day for children and their families living with after-effects of meningitis and septicaemia. 

Held at the Active Rutland Hub, Oakham, it was a fantastic opportunity for children with amputations and neurological after effects from across the UK to come together, have fun, share experiences and get support and advice from experts.
The past two years have focussed primarily on people with amputations as a result of septicaemia. These individuals often face particular complications with skin scarring and abnormal bone growth that do not affect other types of amputees. Howeber, the after effects of meningitis and septicaemia are not limited to physical after effects. Children can be faced with neurological after effects ranging from mild to severe. This year Pushing the Boundaries focused on families living with neurological and/or physical after effects

We were joined by former Rugby World Cup winner Ben Cohen, MBE, and London 2012 Paralympic Wheelchair rugby athlete and MRF Ambassador Aaron Phipps - who shared his personal journey. Other highlights included:
  • Dr Jen Dainty on the after effects of bacterial meningitis and how we can help.
  • Dr Uttom Chowdhury on understanding and managing behavioural problems after meningitis.
  • Dr Sian Rees on transition at school.
  • Fran Dancyger, Jan Eastwood & Emma Weatherdon on effects on siblings and families. 
See the full presentations below.

The children were entertained by an array of activities - we all enjoyed the balloon modeller in particular, who made fantastic spiders, unicorns and monkeys. The kids took part in sports sessions introduced and run by specialist sports coach John Duggan, such as wheelchair basketball, rugby and curling - which gave them an insight of Paralympic sport. They could take time out to colour, play board games, read books and watch some movies in our quiet zone.

For many families, this event has become an annual event - such as Julie Jenkins, who has attended all three Pushing the Boundaries events. Julie's son Louie contracted meningitis 3 and a half years ago. He spent two weeks in intensive care and a further ten weeks in hospital. Louie had to have both legs amputated and lost the fingers on his left hand. Julie has found the events to not only be useful to Louie but to his older sister Francesca too. Julie spoke to Rutland Radio on the day and said:

"[Louie] is a very happy, boisterous little four year old. He's been wearing prosthetics since he was 11 months old; it's just an every day thing now. We get up, we get dressed and he puts his legs on, like how we put our shoes on... [Pushing the Boundaries] is fantastic really, especially with all of the specialists that come that we can talk to and listen to. It gives me an insight of things that could potentially crop up in future, or things that have already happened that I can get more of an insight into. And, to me as a parent, I need to know as much as possible so that if it does come up I already know who to speak to and where to go in order to get all of that the information, so these events are just invaluable to me really... Louie doesn't really see himself as any different to anybody else, he goes to a mainstream school now and he's just accepted as himself. But certainly for his older sister it's lovely for her to see children that are exactly the same as him, and although it's become a normality of life for us to just put his legs on, he is still different in a sense and it's nice for us to see other children and just have a bond with them."

Follow this link to listen to the full radio clip - including an interview with Ben Cohen. It starts at 5:39 minutes, and again at 15.22. 

See the full slideshow of the fantastic photos of the day, taken by attendees and Giulietta Verdon-Roe here.

Dr Sian Rees - the SHIPS Project

Moving to Big School

Dr Uttom Chowdry - Consultant in Child and Adolescent Psychiatry,Bedfordshire and Luton Mental Health and Social Care Partnership.

Understanding Behavioural Problems

Fran Dancyger, Jan Eastwood & Emma Weatherdon from Contact a Family discussed the impact after-effects has on siblings.

Brothers and Sisters Workshop

Dr Jen Dainty - Clinical Psychologist , Alder Hey Children’s Hospital.

After Effects of Meningitis and Septicaemia

Many thanks to Ben Cohen MBE, Leicester-Shire and Rutland Sport (LRS) and all the sports coaches who are providing activities for the children. We are grateful for their inspiration, leadership and support for this key family day. 

We would also like to thank The Felix Byam Shaw Foundation, Clarke Willmott and GSK for sponsoring the event.

Ben Cohen, MBE

Former Rugby World Cup winner 

England Rugby World Cup winner Ben Cohen attended the event, spoke to parents and children, gave a local radio interview and gave a talk on 'The StandUp Foundation Against Bullying.

Aaron Phipps

London 2012 Paralympic Wheelchair Rugby Athlete and MRF ambassador

Shared his personal story and experience of meningitis.

Dr Sian Rees

Specialist teacher at the Ships Project (Supporting Head Injured Pupils in Schools) and Bristol Hospital Education Service

Sian gave a talk on transitioning from primary school to secondary school.

Dr Uttom Chowdhury

Consultant in Child and Adolescent Psychiatry, Bedfordshire and Luton Mental Health and Social Care Partnership

On understanding and managing behavioural problems after meningitis.

Fran Dancyger, Jan Eastwood & Emma Weatherdon

Contact a Family

Discussed the impact after-effects has on siblings.

Dr Jen Dainty

Clinical Psychologist, Alder Hey Children’s Hospital.

Jen spoke about the most common after-effects of meningitis and what we can do to help
We know that recovering from meningitis and septicaemia isn’t always easy. Facing the future can be harder still. With over 26 years of experience supporting people in the UK we are here to help.

Membership – Join us for free to stay up-to-date with our work and the latest developments. Take part in research or a research site visit and meet others with similar experiences.

In-depth disease information – With the help of experts we can provide answers to the questions you need answered, so you can make more informed decisions about your care.

Befriending – Support from someone who’s been there. We match people with trained individuals who have been through a similar experience.

Home visits – To talk through questions and concerns and to offer ongoing support.

Disability rights and benefits information - You might be entitled to a range of different financial and practical help you are not aware of. We can signpost you.

Our vision  is a world free of meningitis and septicaemia. We have invested millions of pounds into research which focuses on the detection, prevention and treatment of these diseases.

Get it touch:

Tel;  Freefone helpline: 080 8800 3344
Email:  helpline@meningitis.org