The Transverse Myelitis Society (TM Society) held its second Family Weekend in in July 2016 at the Calvert Trust in the Lake District. (The first one was held in July 2015.) This venue is a residential outdoor centre with over 35 years’ experience delivering challenging outdoor adventure holidays for people with disabilities.
The Family Weekend brought together children and young people living with Transverse Myelitis (TM) and the related conditions ADEM and NMO, their siblings and parents. Challenging outdoor activities, educational Q&A sessions with medical professionals, neuro-physiotherapy sessions, swimming, games, and even a disco enabled the families to be themselves, have fun, share, support one another and learn.
Help to organise the 2016 event was obtained from two parents to enhance the sustainability of the Family Weekend on an ongoing basis rather than rely on one volunteer to organise it, and to nurture an ethos and practice of the weekend being by families for families.
This year 15 families attended taking 59 of the available 60 places. The cancellation rate was only 1.7%, whilst in 2015 it was 29% with 9 families taking 39 places. We believe the higher take up is due to
- Charging a small deposit per person to enhance commitment provided the family could afford it. The deposit was refunded if the person attended and families were notified of this in advance.
- The two parent organisers were the primary liaison with the families. They also called families throughout the registration process to let them how it worked and answer their questions
- The event itself is gaining momentum in that 7 of the 15 families also attended in 2015.
New activities were added to the 2016 weekend including
- Educational Q&A session between the medical professionals and the children and young people including siblings
- 30 minute neuro-physiotherapy sessions
- Having an equipment provider demonstrate an off-road wheelchair
- Four young people aged 14+ were camp counsellors to assist the lead organiser support the younger children
This year feedback was formally obtained via an online evaluation form which had a 47% response rate (7 of 15 families responded).
100% of respondents said the weekend was excellent or very good. For each aspect of the weekend, the feedback was very favourable.
- 57% found the outdoor activities excellent whilst 43% said they very good.
- 71% said the evening activities excellent whilst 29% said very good.
- 6 of the respondents had a neuro-physiotherapy session. 57% of them found it to be extremely beneficial. The others found it very beneficial or beneficial.
- 86% of respondents found the Q&A sessions with the medical professionals to be excellent or very good.
In response to the one thing they got from the weekend,
- Parents said speaking with and learning from other parents; knowing you weren’t alone. They also found the Q&A very informative.
- Children with the condition said having fun without being judged and meeting other people like them. They learned a lot from the bladder and bowel talk. One said he now believes nothing will hold him back regardless of being in a wheelchair and having other health issues from the condition.
- For siblings, they enjoyed meeting others who ‘understand’. In one family, it helped the older son understand his younger brother’s condition better and he now helps with his younger brother’s physiotherapy.
In response to what has changed for the families as a result of the weekend, they said:
- Less scared of the future and better able to cope with what happened.
- Feel very supported with a lovely TM family who we can call upon if we have a problem.
- I’m definitely more relaxed, the future really worried me full of if’s and but’s.
- Learning more about the condition, being together as a family…Meeting lots of amazing people whom are in the same situation.
- Further awareness of what can be offered through the medical professionals and the TM Society.
The formal report on the 2016 Family Weekend can be found here.
A WOW! Exchange case study on the 2015 Family Weekend can be found here.