We asked and you answered, thank you!

Late last year, Office Manager Diane Stephens organised and ran a survey via the TOFS Facebook page.
She wanted to get a better feeling for whether or not we are doing the right things, whether or not we are doing things that you value, and so on.  It seems to have given us some very useful information, and thanks to those of you who took the time to respond.

An impressive 89 people took part, which is a noticeable slice of our membership, and a meaningful number in other ways.  For instance, we believe that about 180 TOFs are born every year in the UK and we estimate that there are about 3000 TOF children in the UK.  We can’t claim any great science about the survey though – those of you who answered selected yourselves –  and we only asked those people who are online via Facebook.

Frequency of use
The first question asked how frequently people use TOFS services.  It is impressive that 31% of respondents use us every week, and 57% monthly or weekly.  It is obvious that what TOFS provides is playing a useful part in many peoples’ lives.  Almost as interesting is that some people who say they use TOFS services annually, or even never, nonetheless have bothered to complete the survey.  So even if you don’t use TOFS, you seem to care about us!

Importance of various TOFS services
The survey asked people to rate the various things TOFS does.  We asked you to rate each service in one of four categories:  “most important” (to you);  “useful”;  “not really useful”;  or “never used” (by you).  The answers we received to this were very interesting, and are shown in our charts.  The Facebook group came up as the most important service for the most people - 73%!  This is not surprising given that we were surveying Facebook users!.
Several services were regarded as either “most important” or “useful” by 90% or more of respondents.  These most–liked services were:  the Facebook group;  information leaflets;  being put in touch with others;  and the website/forum.
These things are the core of what TOFS does, and it’s very pleasing to hear that they are so extensively liked.

Some of the other things that TOFS offers are not so heavily used. For instance our telephone support service (both at the office and out-of-hours) was heavily used in the early years of TOFS but the forum and Facebook page have substituted for these to quite an extent over the past few years.

One of the survey respondents said “I have never used the telephone support (yet) but I am very grateful that it is there”.  Given that these telephone support services cost TOFS little money, we would not expect to withdraw them.

Chew is well liked, with 85% of the respondents putting it in one or other of the top two categories, so we plainly are not wasting our time pulling this together. 

The response in terms of parties, conferences and so on will no doubt get the trustees thinking. The TOF community is small in numbers and widely spread.  Because of this, the small number of events that we can put on will always leave a significant number of people feeling (geographically) left out.  That said, these events have attracted a lot of people over the past couple of years –  see the separate article in this Chew.

Our network of TOFS local contacts (TLCs) is a relatively recent re-introduction, which is still getting itself established. The trustees felt a couple of years back that having a local face to TOFS could really help TOF people, especially the parents with babies or younger children.  The Adult TOF services are also relatively new and, unsurprisingly, not the most popular with a general audience of all TOF people.  We would point out that – unless the unthinkable occurs – all TOF children grow up to become TOF Adults.  It is a good idea to know what is around the corner: not all TOF adults are free of TOF-related problems, as the health professionals would once have had us believe.

In what ways has TOFS made a difference?
The key difference which TOFS makes is to reduce the feeling of isolation, as you can see from our chart.  Interestingly, few respondents think that their TOF child feeling alone is a big issue to which TOFS has made a difference.  It is hard to know whether this is a real problem that TOFS is not helping with, or if it is not a big deal!  We would suggest trying to get to a party or the conference, or a small TLC-led local gathering, to tackle feelings of isolation of TOF children.

This question received some interesting comments, such as: “the school carers’ guide has really helped us”; and “I would not have been confident or able to help my daughter progress through her milestones without TOFS”. Perhaps the best one was “Whenever we visit our GP, he uses the TOFS website for guidance. It has come in extremely handy on quite a few occasions”.

Do you know of any other support group?
Only 21% of the participants know of another support group like TOFS. Well, there are some, and in their written responses, several people mentioned the groups in New Zealand and especially Australia. One interesting and gratifying comment was: “I belong to other FB groups and online forums here in the States, but they are not as active as TOFS.”

How many people have benefited?
We asked how many people in the wider family have benefited from TOFS.  In most cases, the answer was said to be 3 or 4 people. The average number is 4.2!  We assume that this means one TOF and 3.2 other family members.

Chew by post or email?
A posted hard copy is the preference of two-thirds of the people we surveyed.
We received quite a lot of interesting comments too. Several people said that they would be happy to receive Chew by email so that TOFS can save the postage – that’s very helpful of you.
But we were also told “I would never get around to reading it online”.  Several respondents said that they hand around the printed magazine “email is acceptable but this way (posted hard copy)  I can take Chew to school”.
By the way, there is no plan to stop printing Chew.  It is certainly true that TOFS is watching the pennies, and we have saved some money by making email the normal delivery method for members outside the UK and for professional members.  We have also changed the way Chew is assembled and printed, meaning quite a saving there too.

How could TOFS better support your family?
The answers to this question were all in the form of comments.  More than a third of the answers told us that we are doing well already.  One said: “I can’t think of anything; TOFS provides amazing support already”.  A handful of respondents said that, since they don’t live in the UK, they are not expecting any more from us.  Twenty percent of the comments suggested that TOFS could usefully do more local events, parties, or just informal meetings.

If TOFS wasn’t here…The survey’s last question asked what you thought the impact on parents of new babies would be if TOFS services were not available.  We received an amazing 69 written comments to this one. The strong consensus was that the impact would be terrible.  Here are a couple of typical comments:

“I think without TOFS, new parents would, for a start, find it very difficult to find any information on their child’s condition; even my GP swears by it.  A lot of hospitals and care providers, such as the hospital my daughter was born at do not have a lot of knowledge on the condition.  The TOFs website gave us hope, made us feel better informed and really gave us a heads up on things that would come up along our TOF journey”.

“Frightening and very hard.  Most of the information and understanding I have gained about my daughter’s condition has been from TOFS and, through them, from other parents.  About 70% of my knowledge has come from the TOFS website, Conference and Book.  Thank you”