At present families can apply for a means-tested refund for the costs of travelling to hospital for treatment, however, the costs of travelling to hospital for visiting can only be met by a discretionary fund which is frequently over-stretched. This means that at a time of great stress, a family may also be facing financial difficulties.

In response to an article on the above subject in CaF's magazine recently I wrote to Jill Harrison, Director of External Affairs at CaF who is leading the campaign. I wanted to highlight the fact that some of our members have mentioned to us that they incur high travel costs while their child (or children) is in hospital or having regular outpatient appointments following surgery, due to the fact that the specialist hospital is often some miles from their home.

In her reply, Jill Harrison pointed out that CaF are particularly interested in attempting to persuade the Government to refund visiting costs for low income families at present, but she did make one or two interesting comments – here is an abstract from her letter.

"You are quite correct that there is no statutory help for fares for treatment for families who are not low income (although what classes as low income will vary according to the size of the family and the amount of travel costs which are being incurred). The assessment of low income is more generous than for benefits like income support - for example, outgoings like capital repayments on a mortgage are included in the calculation. So some families who may not qualify for benefits could find that they are still entitled to some help with fares, particularly if the costs are high because they are travelling long distances. It is certainly worth your families applying they may find they get a certificate of partial help. This would mean that any fares over a certain amount would be refunded for example the certificate might say that fares over, say, £50 a week will be refunded.

Failing that, your families may be able to get help from the Family Fund Trust, where income assessments are more generous, although the child has to have a severe level of disability. The Roald Dahl Foundation also gives grants for these kinds of expenses (although families can only be a little over benefit levels for this Foundation).

This is an area which interests me greatly, so I was very pleased to hear from you. If we win the battle on visiting costs, we may well look then at a campaign to improve the calculation of benefits for travel for treatment costs so that more families can benefit. I will certainly come back to you if we are able to do this."

If you would like to know more about the funds mentioned by Jill or the statutory scheme for fares for treatment, you can get further information from the CaF free helpline on 0808 808 3555.

Please let us have any comments you may have on this matter – we are keen to hear from you, as are CaF. Thank you.

Helen Small

Noticeboard

I have started playing football again (at 38 – am I crazy!?!), goalkeeping on rock-hard sandy astro-turf and it hurts like mad every time I land on my left leg with its very sizeable protruding lump (top, outer-side of calf). Why? Because I am not going to let pain dictate what I can and cannot do. Every game I finish up in a pretty poor state – very, very sore and virtually unable to walk for the next 24 hours, but I really enjoy playing so to me it is worth it.

What is the moral of this story I hear you say? Well, I get the impression sometimes that some parents are inclined to think that if their child suffers from HME, they cannot actively participate in something. Maybe they can, maybe they cannot, but try to remember: It is an issue of 'quality of life' – sometimes the enjoyment outstrips the pain. Every time I play the drums for more than an hour or so, I suffer for it – particularly in the ankles. But hey, let that stop the biggest passion in my life? NO WAY!!!

Funnily enough, not long after I started playing for another team in the same league (their goalie got a long term injury – how ironic) and now I play two one hour games back to back. This is great for overall fitness, but makes the bruising more of a concern. So, I rigged up a combination of a shin-guard worn on the outside of my left leg (calf height) with cotton wool pads taped inside as padding for my lump. Works a treat! I reckon there is always a way around things, Okay so no prizes for the slickest or coolest looking solution, but it works.

Martin Ranscombe

Our son Thomas (aged 3) has HME. We will shortly be moving to the North Wiltshire area. If there are any members living in this area able to recommend a paediatric orthopaedic consultant and hospital where they have been satisfied with consultation and treatment, we would appreciate hearing from you. Thank you.

Contact details are

Sarah Nicholls
44 Keyhaven Road
Milford on Sea
Lymington
SO41 0QY
Email: Roy@seelife.freeserve.co.uk
Or telephone me on 01590 643369.

We are often asked this question by members and although we can't recommend Surgeons, we could hold a list of those that our members have mentioned. It would be particularly useful to know if a Consultant has an interest in HME or specialises in a certain surgical procedure. Or if they are paediatric specialists or adult or both! Please let us know about your Consultant Orthopaedic Surgeon so that we can get this idea off the ground. Thank you! HMESG Committee

I had a great time in Birmingham at the Conference. It was fantastic to meet in person so many people the same as me. There were so many people who gave me email addresses to keep in contact that I have decided to start an email chat group. Basically people register with the chat group and then every email sent to UKHME@yahoogroups.com will be sent to everyone that has registered with the chat group. If people want to join they should go to http://www.yahoogroups.com and in the search box they should type UKHME. The letters must all be in capitals. They must then fill in the registration details, which will be sent and approved.

Susan Steggles-Cole
susan@steggles.net

If anyone has any presents small or large that they got for Christmas and don't want, we need them for another fund raising event on 24 August 2002.

Please contact Dawn for more details (01438 861866).

Remember without your support we cannot grow. We hope to one day have enough funds to help with the research into HME and find a cure!

Dawn Searle

Fundraising

A massive thank you to:

Symonds Green Carpet Bowls Club in Stevenage, Herts for their donation of £25.00.

1st Walkern Brownies in Herts who did a Christmas Fete and made lots of nice things to sell and did a raffle. They raised £95.00. Robert Searle's sister suggested to her Brownie friends that they do it for HMESG – well done!

All the relatives and friends of Dolly Eldridge (Dawn Searle's Nan) who passed away. Dolly asked for no flowers and all donations to go to HME. Thank you. £75.00 was received.

Mrs Marlot who sent a donation of £20.00.

The Executors of the Estate of Mary Ann Higgins for their donation of £500.00.

Bob Champeau for the donation of £50.50 from conference video sales.

George Gray for the donation of £230.00 which was raised by various means. Most of it was via George's hobby of building, upgrading and repairing computers for family and friends, but donations were also received from other members of George and Anne's family.

Mrs Toni Champeau for her donation of £10.00.

Many thanks too, to anyone we may have inadvertently missed off the list.

Out and about with...

Dawn Searle The disco that was being organised by Dawn for May 2002 has fallen through. We thank Dawn for all her hard work, but unfortunately this was beyond her control.

Stephen and Judith have been working hard to update the membership pack. We are keen to receive completed registration forms for all members, especially now as we enter into being a Registered Charity. If you have not returned your form and would like a new copy please let us know. You can now complete the form online too, by going to our home page and clicking on "Join the Group".

Julie McEvoy is a close family friend to The Ropers and she has started a slimathon, with all monies raised being donated to HMESG. She informs me that so far seven people have sponsored her and she has money totalling close to £300.00. She still has a lot of people to appeal to, so best of luck and keep up the good work.

Contact a Family Last newsletter there was a freephone number you could ring which aims to put families in touch with local and national groups. I thought it would be a good idea to keep it in print:

Freephone 0808 808 3555, 10 am – 4 pm Monday to Friday.

New HMESG Address and Telephone Number We have a new telephone number and address. Should you wish to forward a piece for the next newsletter you should send that to the Newsletter Editor direct (see below). Please make contact with HME Support Group. We would love to hear from you:

By telephone

01438 86186

Or by writing

HME Support Group
PO Box 395
Headington DO
Oxford
OX3 9WF

Kids Bit!

My name is Joshua Roper, I am 10 years old and I have HME. My Mum and Dad found out that I had HME when I was 18 months old. Since then I have had 18 operations. They have ranged from removal of exostoses to lengthening of my left arm and my left leg.

I have been unable to take part in many sports, especially football or rugby. But now I have found a sport that I am good at, that is swimming. I am in a swimming club, which I go to every Sunday evening and I also swim on a Saturday afternoon with my family

My swimming tutor tells me I am very good and I hope to swim for my Club in their annual swimming gala in October. My ambition is to swim at the Olympics one day.

My friends help me when I am at school. We are currently making a ball out of elastic bands, it is as big as a basketball at the moment, and we have got to get up to four feet in diameter to break the world record.

Joshua Roper

When I had my second operation I drew a picture of a sheep, a cow and a duckbill platypus and I entered it into a competition thinking that I would never win, as I hardly ever win anything.

It was a Saturday morning and the post had come and there was a letter for me. When I opened it and read it I did not understand some of it because it was a formal letter with complicated words in it. But I did understand the bit at the top, which said

"Congratulations you have got through to the finals in, WHAT WOULD YOU DO WITH ALL THE MONEY IN THE WORLD competition".

I was so excited and I started screaming, I could not run and scream like I normally do because I had my leg in plaster!

A few weeks later I received another letter saying that two adults and two children could go to London. We travelled there by train and was put up in a holiday inn which was really posh. We put our suitcases in our room and then went and had dinner with the other finalists.

The next day we got to go on a tour of London, we saw Cleopatras Needle, went on the London Eye, walked around the Imagination Art Gallery and watched Toy Story 2.

It was now time to announce the winner. First they gave a speech then they gave everyone a certificate then they gave another speech then the prizes were given out. Third prize went to a little boy and then they said second price goes to… Kayleigh Errington. I went up to collect it, it was heavy, I smiled for the cameras, even though I was thinking, "how heavy can this prize get". When we sat down I opened it and it was a Play Station 2. Now I cannot say I hardly win anything!

Kayleigh Errington

Kayleigh Sarah Errington age 10 (2ND PLACE) "If I had all the money in the world I would buy a duckbilled platypus, a cow and a sheep because they are my favourite animals. I would look after them and I would make sure they had a safe place to stay at night."

Research... Research... Research...

Copies of the following papers are now available. If you would like one, please send an A4 size stamped addressed envelope to the HME Support Group.

"The Hip in Hereditary Multiple Exostoses" D E Porter, M K Benson and G A Hosney

"Hereditary Multiple Exostoses: a qualitative study exploring families' and patients' perceptions of disease impact and self-expressed needs." Maria Fraser and Daniel E Porter

HME School Leaflet, a leaflet aimed at schools with informative and precise information.

Editor's Bit!

Thanks to everyone who has contributed to this issue of our Newsletter. Remember, without your support we cannot keep up with producing this Newsletter.

But, alas, there is bad news lurking. You probably think I am becoming like a broken record and I know every issue I keep going on but I STILL NEED MORE MATERIAL! This is your Newsletter, use it to your advantage.

So, what is the bottom line, well it goes like this. Unless I am sent more pieces for the next edition, unfortunately there will not be one. What do you need I hear you say! Well, I need case histories, children's poems, your views on operations, items on what research means to you, pen- pal letters, fund raising issues, photographs and anything else you can think of. That should give you some idea to be getting on with, but feel free to send in anything, even if you think it is useless, I assure you it will be put to good use.

Helen said in her note from the Chair we now have 150 members – just think how many Newsletters I could write if each and every one of you sent me a piece of information!

I look forward to hearing from you all very, very shortly, in the meantime happy summer holidays!

Debi Roper

We want to hear from YOU!

Submissions of articles and comments to:

Debi Roper
7 Moreton Road
Aston Upthorpe
Nr Didcot
Oxon
OX11 9EP

by the end of June 2002 please!

Our Next Meeting

This will be in 2003, so you will receive further details nearer the time.

Moving House?

Please don't forget to let us know when you change your postal address, telephone number or email address. Thank you!

Disclaimer

Please note that any views expressed herein, by individual group members, are not those of the Group as a whole and separate entity.

HME Support Group

PO Box 395
Headington DO
Oxford OX3 9WF
United Kingdom
Tel. +44 1438 861 866
Email: support@hmesg.co.uk
www.hmesg.co.uk/

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