February 2000 Newsletter

 

I trust that you have all come through the festive season refreshed and belatedly wish you all the best for the New Year. I look forward to meeting many of you at this years gathering which is discussed further inside.

I hope that the new "millennium" will bring further steps in the research being undertaken into FSP where data on family histories is a particularly valuable tool. Audrey Town is still collecting information here for the research team and I would ask you to read her article. Please make it a New Year resolution to provide any information available.

Our group is about to receive significant press exposure when Stephanie Pengelly, who looks after our Help Line, makes an appearance in the Times Lifestyle magazine. See further inside.

VAT Free Boats

Did you know that many items, including appropriately adapted boats, are zero rated for disabled people?

This feature is included in a Customs & Excise booklet (VAT Notice 701/7/94) extending to 42 pages which, amongst other items, shows a range of goods and services that can be zero-rated.

The former includes medical or surgical appliances, chair lifts & hoists, emergency alarm call systems, specially designed motor vehicles, boats (!) and other equipment designed solely for disabled persons.

The latter includes the installation of zero rated goods and certain building alterations; for example the construction of ramps or widening of doorways.

In practice the rules are very complicated and the important message is that if you are incurring any costs specifically related to a disability check whether VAT needs to be paid.

Certain outlets dealing specifically with disabled goods (of which we have one in Harrow) will be experienced in the regulations but do not be afraid to ask.

If you would like to know more, the above booklet can be obtained free of charge from your local Customs & Excise office.

Millennium Dome

Is accessible to anyone wishing to visit. There is a free pre-bookable wheelchair loan service, 600 spaces for orange badge holders and 69 accessible Ioos (none of which require Radar keys). Ring 0870 2410540 to reserve wheelchairs and parking.

We would be interested in any feedback from those who undertake the trip to Greenwich.

Millennium Meeting

Do you know of a disabled centre in or around The Midlands that can cater for up to 100 people in the late summer and do you have any thoughts on the agenda?

Despite having only reported on the 1999 meeting in the last newsletter, we are already considering our plans for the year 2000 meeting.

Our experience from last year in our established Birmingham centre was that its capacity for 75 visitors meant that space had become tight and that places were limited.

If the popularity of our meeting is maintained we will have to consider finding a larger venue. We have in mind that the meeting will be held in early September, after the schools have returned and before the clocks go back.

We would need accessible accommodation with a main room able to hold up to 100 people, secondary meeting rooms, catering facilities and, of course, adequate parking facilities. If you know of any such venues please contact one of the committee whose numbers are on the back page.

Even if the venue you have in mind is already booked for 2000, we might be able to consider it for 2001 so please get in touch.

One of the primary aims of the meeting is to share information with group members. If you have any ideas for items to be included on the agenda let one of the committee members know.

Invitations and agendas to the 2000 meeting will be dispatched with the May newsletter but, in the meantime, you might want to mark off the 9th September in your diaries.

Winter Fuel Payments

Have been extended to men from the age of 60, rather than 65, to equalize the position with women following court action based on sex discrimination.

This has taken the authorities somewhat by surprise and they have not yet been able to implement the new rules so payments cannot yet be made. However, there will be a high profile campaign later in the year to draw people's attention to this new benefit and to explain how they can claim their entitlement.

Benefits agency leaflet RM1, "A guide to benefits for people who are retiring or have retired", which is available free of charge, has yet to be updated to show the new rules.

Press Coverage

Stephanie Pengelly Reports

As a part of a broader piece on my canine partner, FRODO, I will be appearing in Times Lifestyle magazine at the end of January. There will be a small piece on FSP and my name and number will be published for the helpline. This will be the first time we have had high profile recognition in the National Press so we hope to get some feedback.

We are also going to be filmed for a BBC1 program on clever animals scheduled for May Bank Holiday Monday at 8pm. We haven't been filmed yet but if I have the chance to mention the FSP condition I will.

Thanks to the efforts of Sally Langton, we have also had an article published in Disability Now, attracting new members, and have submitted articles to Essentials and Woman & Home

REMAP

Sally Langton Reports

Have you had difficulty tracking down an item that you feel would particularly meet the needs of a problem you are encountering as a result of your disability?

If so, the above charitable group, established 30 years ago, specializes in the manufacture of one-off aids specifically tailored to the needs of the individual. Their remit is to provide items that cannot be acquired through the general retail trade and their service is free of charge.

If you have a specific need for something that they might be able to manufacture, you can contact me or John Wright at Hasledene lghtham, Seven Oaks, Kent TN15 9AD. John's phone number is 01732 883818.

In addition, if you have any general problems finding useful aids I will be happy to try and help.

Questions & Answers

Q: a gentleman has recently contacted me with a query on scoliosis and peripheral neuropathy. He has tried a remedy called Tibetan Mushroom and says it works for a variety of complaints.

A: I had to admit that I have no experience of this very complicated form of FSP. If any other member of the group has any further details I would be pleased to hear from them.

Please contact Robert Jenkins direct on 01789 415993 if you would like to discuss the position or the remedy he has used.

Family Records

Audrey Town Reports

Thank you for the family records you have supplied. The information is to be studied, under the direction of Dr T Warner, in University College London. Some of you have supplied details concerning relatives who have been diagnosed with MS and other disorders of the nervous system or infants who have unusual problems, as well as grandparents who have become bed-ridden/housebound. This will undoubtedly be very helpful.

If you haven't yet found time during the Christmas/New Year bustle to complete your form, please try to do so. Everyone's contribution is of value, even if you can only supply information about your own generation. Your information will never be too late. If your form has been misplaced, or went astray in the post, David Pearce or I will be happy to forward another.

As a group I believe that we might represent only a small proportion of the families in the UK who are affected by FSP. If each and every one of us supplies as much information as we can it will form a valuable basis for research.

The Newsletter - Our Future Together. Disabled Living Allowance

Have you recently been successful in applying for this valuable state benefit?

If the answer to this question is yes, I am particularly keen to hear from you so that I might be able to personalize a future article on this benefit, which can significantly improve the lifestyle of the recipient.

I recognize that the application process is complex and that the success rate is likely to be inconsistent in different parts of the country. The lessons we can learn from a successful applicant are likely to improve the chances of new applicants and might well encourage people who have failed to reapply.

We can, of course, also learn from the experiences of unsuccessful applicants so if you fall into this category I would be grateful to hear from you as well.

Other News

Adverts

If you have any items that you want to dispose of that might be of interest to other group members then let me know and I will add a spot in the newsletter.

I have in mind items particularly associated with disability but you might have other items of interest. Perhaps you have used holiday accommodation that is particularly suited to the disabled - if so let us know.

2000 Marathon

Our best wishes go to Wendy Berridge, David's wife, and her friend Gail Laws who will be running the marathon later in the year and raising money for FSP.