We run meetings in different locations and venues throughout the year. Click on a location to find out more...
The Group were very conscious of people’s mental health and well being during the lockdowns so we started using the Zoom platform to conduct meetings to enable people to chat amongst fellow HSPers. These get togethers proved popular and one huge bonus is that we see people who are unable to attend physical meetings due to mobility or transport problems. For this reason, we took the decision to continue them indefinitely.
A Zoom meeting for all those coping with HSP takes place on the first Wednesday of every month at 7pm for a duration of 2 hours maximum. These gatherings are informal and provide the opportunity to introduce yourself, make new friends, chat to existing friends, ask any questions and learn from other people’s experiences. Anyone interested is welcome to come and go as they wish and does not have to speak if they don’t wish to.
Members of the Group are sent two reminders of these meetings by email. One reminder will be sent two or three weeks before the meeting and the second reminder will be sent about a day before the meeting and these reminders will include the joining information. Some of these meetings will also be detailed in the Newsletter. Watch out for details of the meetings on social media too.
The Dartmoor Lodge Hotel is only a few hundred yards off the A38, half way between Exeter and Plymouth, so is easy to find and get to by car. It has a large car park and level access into the building. There are two meeting rooms and we usually have the larger one that comfortably holds in excess of 60 people. The most I’ve had in attendance was 48 and the least I’ve had was 18. Although it’s an old hotel, it’s wheelchair friendly and there are good spacious disabled toilets.
Members like the traditional bar area for getting together prior to the meeting commencing, and many arrive early and have lunch in the bar area or restaurant.
Meetings always commence by welcoming every one and updating them on any HSP news they may have missed, possibly by not attending our AGM. Guests are made aware of the agenda for the afternoon and any new faces are welcomed. The meetings begin at 2pm and last for three hours but members are told that they are welcome to come and go as they wish. A raffle always takes place midway through the meeting and members are very generous with the prizes they bring. The raffle always raises enough to cover the cost of teas and coffees and any extra money goes to the HSP Support Group.
Sometimes we have a speaker and sometimes we don’t. If we have a speaker, their slot is after the initial welcome. Time spent talking to one another and learning from each other is the most important part of the meeting.
Every meeting, a number of members decide to stay overnight in the hotel and make a weekend of it. The hotel kindly provides us with a reduced rate for accommodation. Those of us who stay overnight, all sit down and have dinner together on the Saturday evening and we also have breakfast together on the Sunday morning.
All members of the HSP Support Group are welcome to attend, and so is anyone else from the South West who has an interest in HSP or whose life is effected by HSP.
Ashburton meeting organiser: Ian Bennett
The West Midlands support group was started in October 2014, by June and Penny.
Penny lived in Surrey and regularly attended the Milford meetings, and in the spring of 2014 was moving to Warwickshire with her family and had been worried about moving to an area with no HSP local support group. Ian (then Membership Secretary) was contacted by June in March 2015, who had only just been diagnosed and was keen for information etc. He introduced them together at the AGM, where they agreed email address exchanges.
June found a wonderful place just outside the centre of Birmingham and in April 2015 we had our first of many meetings there. On this first occasion we had a company come and show us some of their scooters and wheelchairs as an interest had been previously expressed.
Our meetings are held at The Kenrick Centre in Harborne, which is a Day Care Centre with a Residential Care Home attached and is run by Birmingham City Council. The room we hire is on the ground floor, will hold up to 20 people, and is fully accessible – automatic opening main front door, is completely flat, has disabled toilets.
The car park is small, having only 15 parking places plus 4 disabled slots, but the local neighbourhood accommodates any overspill and is only about a 20yd distance from main entrance.
Refreshments are brought to our room on arrival, and to which we help ourselves (disposable cups, flasks of boiling water, paper sachets of tea, coffee and sugar, individual milk capsules, wooden stirrers). We also have cake and biscuits.
There is a small restaurant serving good hot and cold food to order at very reasonable prices. We usually break our meetings to share the lunchtime together here. After finishing lunch, we return our trays with used plates etc to a stacking point where they are taken away by the restaurant staff to be cleared/washed.
We now have up to 14 HSP members who come on a regular basis, some with partners/family members/carers, and from about a 50-mile radius.
We have 2 three-hour meetings a year, in Spring and Autumn, where we try to accommodate everyone by alternating between Saturdays and Sundays (when possible). We also hold a Festive-type lunch together at a lovely pub/restaurant towards the end of January.
The priority for our meetings is for us ‘rare’ folk to be able to meet each other, share our HSP journeys, our difficulties together with all the positives, have a good time meeting up with ones we know well and with of course, the hopes of meeting new friends too, who might be wanting information.
We usually start our meetings with a welcome to everyone and introducing any new members, followed by any HSP news/info, and news from those who couldn’t join us. We have several members who do not use the internet so we make sure they are up to date with everything.
On an occasion when we were to be having a speaker, we would try to plan for him/her to speak mid-way through the session, to enable us to have been able to have shared news etc and to have had a lunch – this would also allow time for reflection/discussion after the speaker and before the end of the day.
Before closing our meeting, we will have asked our members if they would like to have a speaker at our next meeting, remind them that we are always happy to try a different venue and equally happy to pass on/share any of the responsibilities. The meeting is theirs and we are purely facilitators. A date for the next meeting will be agreed (which will be confirmed later).
We have had several speakers at our meetings which June has arranged. These include, Dr Benamer- Genetics, Professor Sturman- Various relative subjects and Fiona Shea – Occupational Therapist
We are very well looked after at The Kenrick, the room can be set up however we want it, we just have to let them know in advance.
Midlands meeting organisers: Penny Cohen and June Masding
We meet up at the Community Centre in the village of Feering which is just off the A12, south of Colchester (CO5 9QB).
Around 20 of us, including family, get together twice a year, in Spring and Autumn. We meet on a Sunday afternoon for about 2 ½ hours.
The Community Centre has a car park and the entrance to the building is step free. The floors are all on one level and are smooth. The room we use is light and airy and there is plenty of space to move around. There is a disabled toilet just next to the room. So, the venue is suitable for those who are walking or for those using a wheeled mobility aid.
We provide tea, coffee and biscuits when everyone arrives. Then, sometimes, we have a speaker such as a physiotherapist or an occupational therapist. At other meetings we have a general discussion on subjects which are important to us. However, there is always plenty of time for people to chat amongst themselves as well. We can share information and support with the group as a whole or through individual conversations - whichever we prefer.
Everyone living with Hereditary Spastic Paraplegia (HSP), whether because they have it themselves or because they have a loved one who does, is always welcome to join us.
I love meeting everyone and it’s heart warming to see people get to know one another as they discover how much they have in common.
If you would like to know more about our meeting or if you have any questions, do get in touch with me.
Colcherster meeting organiser: Hilary
We started meeting up at The Orange Tree pub in Hitchin, with fellow Hsp'rs in 2010. Basically, to meet up socially and spend time with others that can understand living with HSP. Positives & negatives, plus everyday life in general. To meet new people and make new friends in the HSP community.
The Orange Tree has full disabled access & of course facilities, to make your afternoon as comfortable and enjoyable as can be. We try to seat everyone, so that you can move around, if you want to. There's usually between 7 - 12 of us that join the 'get together' and the venue can usually help us move tables around to accommodate everyone.
The meeting is free to attend and there is usually water and glasses available on the tables. We normally enjoy lunch together from a varied menu, available to purchase from the bar. Mostly, it's table service, which can be decided on the day. Some have a snack, a coffee/tea or alcoholic beverage. It's all very relaxed.
We don't have speakers as the venue is not suitable for that, but members usually tell us about things that help their everyday lives etc. You can have quiet chats with those around you or involve everyone at the meeting. As said, it's not structured, it's more 'go with the flow'…
We try to meet up twice a year, in January & September. January, to catch up after the Christmas & New Year celebrations (January can seem like a long month). September, to catch up after the summer months. Everybody is welcome and we always enjoy meeting HSP'rs & making new friends/acquaintances.
Hitchin meeting organiser: Della Brookman
Malton is on a fast road from York to Scarborough and has a rail link from Manchester to Scarborough. Its link with Teesside is through an ‘Area of Outstanding Beauty’ so is a nice drive. Malton is an easy drive from York, Doncaster and Hull through good countryside so it is a pleasant afternoon out.
We have used the Old Lodge for several years and have slowly built up the numbers attending. The constant use of the same place has benefits for new people.
The Old Lodge provides a car park and is fairly flat for those who are ambulatory. The staff are very helpful and serve food and drink to your table (as they do for everyone). It is not wheelchair accessible unless you can also walk. We gather in the bar for our discussions, which has leather armchairs and provides food and coffee and biscuits, which is all reasonably priced. The room has an open fire and is completely oak panelled with a 'secret' door to the toilets. It is suitable for ambulatory people. I use my folding walker when I need to. We continue to look for a step free venue.
Malton meeting organiser: Mike Cain
The Milford afternoon meeting has evolved. When we first started, the afternoons were spent socialising, chatting with refreshments, at the Day Centre, now called ‘The Clockhouse’. During these discussions, suggestions such as, having one meeting a year on a Saturday and one on a Sunday plus having speakers were made.
Consequently, although the afternoon may seem formal or structured, there is always time for socialising and chatting. Following opening updates and news, Carer’s have time together, with the rest of us catching up with those we’ve not seen for a few months. The middle of the afternoon is given to speakers or open discussions. Our speakers are chosen according to current trends, interests or recommendations.
As the afternoon finishes with afternoon tea, we ask people to let us know if they are hoping to attend. With Milford being a central point for surrounding counties and people having to travel, sending our guests home having had some refreshments is important. This is another opportunity for socialising, with an added bit of fun from the raffle.
The Clockhouse, being a purpose built day centre, has all the facilities needed for those with limited mobility. Therefore we are able to welcome the walking and those using mobility aids.
As with other established regional meetings, we are there twice a year. Everyone is welcome. We are lucky to have those who have joined us for many years, whilst others ‘come to see’. This is combined with those who now feel ready or need to meet others, some who can only attend on one of the weekend days as well as those who prefer to drive in favourable conditions in April. We have always enjoyed meeting, greeting and getting to know those that join us for the afternoon.
Milford meeting organiser: Jane Bennett
The meeting is linked with the University 'Genetics Matters' public event around Rare Disease Day.
The public meeting covers a range of Rare Diseases and through talks from professors, researchers, and people with rare diseases and meetings with all of them over free cake and tea, one is shown what is being done and how it applies to you.
Over the years people have been given the opportunity to attend purely HSP private meetings as well as attending the public event. How and where this meeting takes place depends on the University and on those that have said they might attend. Places have been in a bar at my hotel, an NHS/University meeting rooms near Newcastle station, the Department of Genetics at Newcastle University, and last year we were given a room at the Museum. The HSP Group meeting is an informal opportunity for people living with HSP, and their families, to get together and chat with others who have similar experiences.
Newcastle meeting organiser: Mike Cain
We looked at where those who came regularly to the St Helen’s meeting lived and moved the meeting to Stockport, as it was easy for most to reach in 40 minutes. Stockport was chosen because of its connectivity by rail, motorways and A roads.
We use a Quaker Meeting House because it is only half a mile from the motorway and the A6 and has a car park. This is a very modern building with solar heating and automatic doors so it is warm and accessible to those in wheelchairs, also, being completely flat with roomy, accessible toilets. We have use of the kitchen and some fit helpers/carers make tea and coffee etc with biscuits. The room we use is the large room that has no furniture except for some wall seating, leaving the floor completely open. Consequently, the room can accommodate all sizes of wheelchair. We arrange the tables and the stacked chairs so we can all sit round and talk. People can either use wheelchairs or ordinary chairs. A slide projector and Wi-Fi is also available. We sometimes invite speakers to talk on aspects of HSP.
Stockport meeting organiser: Mike Cain
For some time I had been liaising with Scottish HSPers with a view to setting up a meeting in Scotland. Stirling had been agreed as a location to which those involved could travel and a venue had been booked for August 2020. However, Covid took over and so zoom meetings were held in December 2020 and February 2021 instead. Zoom meetings have the great advantage that they are an easy way for people to meet up without the need to travel. However, others prefer to meet face to face and a further zoom meeting is planned at which we will discuss a possible location for when it becomes safe to hold meetings at a venue in Scotland.
Scotland meeting organiser: Joe Mills
I became a member of the HSP Support Group some years ago but when I searched for members’ meetings I found a distinct lack of members’ meetings in my area (Wales). So I tried to arrange some face to face meetings but covid reared it's ugly head so I arranged a couple of online zoom meetings instead.
I have hosted three of these meetings so far and found that none of the members in my area knew each other and these meetings seemed to be the only way that members could ask each other about their symptoms and any treatments that may work for them, and also just have a general chinwag, I was amazed at the amount of people that just suffer in silence, and these zoom meetings are perfect to avoid that.
Due to the fact that there is no substitute for physical meetings, I will be arranging some face to face meetings as soon as possible.
South Wales meeting organiser: Kevin Mills