Meeting Locations
We run meetings in different locations and venues throughout the year. Click on a location to find out more...
The Group 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 Thursday and the third Tuesday 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 email reminders of these meetings which 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 Birmingham support group was started in October 2014 by June and Penny.
Penny lived in Surrey and regularly attended the Milford meetings. In the spring of 2014 she was moving to Warwickshire with her family and was 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 to each other at the AGM and they exchanged email addresses.
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 that we hire is on the ground floor, will hold a maximum of 25 people and is fully accessible. Disabled toilets are available.
The car park is small but on a Saturday the local neighbourhood accommodates any overspill and is only about a 20yd distance from the main entrance.
We have 2 three and a half hour meetings a year in Spring and Autumn, and meet up together for a festive type lunch at a pub/restaurant late January/early February. We usually have a light buffet lunch, which is currently paid for by the HSP Support Group. This includes tea, coffee and juice. In the past we have had several speakers at our meetings, which June has arranged.
Before closing the meeting we will have asked everyone if they would like a speaker for the 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 usually be provisionally agreed and confirmed later, once booked.
There are 17 HSP Members who travel from within a 50-mile radius, with family members, partners, friends and carers. The priority for our get-togethers is for us ‘rare folk’ to be able to meet each other and share our HSP journeys. We have a good time with people we know well and of course the hopes of getting to know new friends too, who might be wanting information. We usually have a copy of the Newslink available for new members. We now have a Birmingham HSP WhatsApp group which is being used by everyone.
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 15 of us, including family, get together twice a year, in Spring and Autumn. We gather 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 comfortable and there is space to move around. There is a disabled toilet nearby. 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.
I look forward to meeting you.
Colchester 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: Mary Vickers and Helen Payne
As you can imagine, the Milford afternoon meeting has developed quite a bit, since we started over more than twenty years ago. Always at the heart of the meetings, is making the time spent together social, enjoyable and a place to share information. We do this through giving time and conversation with others or from the guest speakers we have during the afternoon. Although this is a meeting for those with HSP, we also consider the family, carers and friends who share and assist us. With this in mind, at the start of the afternoon, those who want to, have time to discuss the various aspects they are confronted with when trying to help those with our disability.
Everyone is welcome, with no requirement to stay for the whole afternoon. For those who haven’t been to a meeting before, they may choose to come to see and meet our loyal, long-standing attendees/guests.
The guest speakers are chosen according to current trends, interest or recommendations from our attendees. There are times when we have open discussions or themed sharing, such as mobility aids.
With our varied lives, we hold the Spring meeting on a Saturday from 3pm-6pm, with the autumn one being on a Sunday, usually starting at 2pm until 5pm due to early darker evenings.
Milford being a central point for surrounding counties, we appreciate that so many have a distance to travel home. Consequently, we like to ensure that before our guests leave, that they have had adequate refreshments.
The meetings are held in The Clockhouse, which is a purpose-built day centre, with all the facilities needed for those with limited mobility, plus adequate car parking.
We have always enjoyed meeting, greeting and getting to know those that join us.
If you would like more information, please email Milford@hspgroup.org
Milford meeting organiser: Mike and Jane Bennett
If you would like more information, please email hspni01@gmail.com
Northern Ireland meeting organisers: Martin Rafferty and Suzi Clegg
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