AGM 2018: A Carers Perspective of Living with HSP - Pat Reed

The first presentation of the AGM was one of the groups members, Pat Reed, giving us a carers perspective of HSP. Pats husband, Terry, has HSP, diagnosed in the early 1990's. He was additionally diagnosed with Parkinson's in the mid to late 2000's. This post is Pats story.

Pat described their initial journey with HSP, starting to use, and then making decisions at each stage as the needs change, using more or different walking aids. Additionally, they had an increasing need to plan toilet stops into journeys. The Parkinson's diagnosis came at about the same time as the move towards needing a wheelchair. The combination of HSP and Parkinson's is rare, and this is coming from the perspective that HSP is rare in itself.

The journey towards being a carer is slow, like the journey with HSP and its symptoms. In the early stages you don't consider yourself to be a carer, but as the HSP and the Parkinsons takes away the person that you love, that relationship changes into carer and cared for. As the changes are gradual there isnt a specific point when this switch happens, and that doesn't stop you from loving that person.

There is a large amount of team-work involved in this relationship, and the problems are always the conditions, never the person. Solutions are found which work, and these are developed over time as the symptoms change. At the moment, fatigue is key, with energy levels dropping it is a time to make difficult choices about what to stop doing, and what to keep on doing. Difficult decisions to be made when you enjoy and have passion for doing these things.

As a carer, as the condition changes and the need for caring increases, it is necessary to give up your own interests so that you put your energy into ensuring that your loved one can carry on going for as long as possible.

With two conditions, there is a lot of medication to be taken, over a 17 hour period each day. There are alarms and reminders, and the medication interferes with the lack of energy and the ability to have flexibility in your routine. Money has been spent on modifications have been made at home, with lifts, wet rooms, ramps and wider doors. The caring routine includes helping getting dressed, helping getting in and our of bed, helping going to the toilet and helping transfer to a wheelchair.

A range of different specialists have been seen, including occupational therapists, neuro-physiotherapists, and staff at a MS/Neuro centre. Each has been able to offer their help, but for limited times, and the changes to health conditions mean that it is not possible to get to the centre any longer. There have also been various visits to hospital, A&E, but also advice to avoid going to hospitals if possible. This means a further change in the relationship, from carer, to carer and nurse.

The tricky question is - what happens when something happens to the carer? One incident meant that the caring routine was disrupted by dizziness and sickness, such that the bare minimum was done, before getting back to bed to start recovery. In this case, there wasn't any home care available to offer respite during the recovery, so they ended up for a short stay in a care home.

After this, care was organised for two nights a week, offering some respite, but also some guilt, knowing that your loved one is not getting the respite that you are. Having visitors in your home right at the end of the day also means a change to the usual routines.

Being a carer needs you to be strong. It can also be lonely. The strength is needed to change the routines or the medication when you can see that the dis-benefits are significant and don't balance with the benefits. The strength example was a new medication which helped with sleep at night, but also didn't allow for getting things done during the day. The lonely example was the story of having to clean up after not getting to the toilet in time. Some planning is needed so the right things are in the right place at the right time, and a sense of humour and positive attitude are both essential.

The story concludes with a look back from the early days, when trying to get on the Eurostar. Some unsteadiness on the escalator meant they both ended falling over on their way up the escalator. Some other passengers helped to get the upright, but that hadnt stopped their luggage ending up back at the bottom, with no downward escalator. They were taken by the station staff, with their luggage, to the correct point on the platform to get on the train for their seats, and away they went!

UK HSP Group AGM

Last weekend (June 9th) was the AGM of the UK HSP Support Group. The presentations made will cover my next few blog posts.

This blog post covers the AGM, and gives you the behind-the-scenes view of the approach. This AGM was my first as chair of the group, so I was a little nervous about it. I kept having thoughts running through my head - what I have I forgotten to do? who have I forgotten to contact? what will go wrong? Have I done enough preparation?

In the last few months us trustees had been working on several "big ticket" items, and the AGM was the place for those all to come into play. The key items were:

• Voting in a new constituion
• Reminding everyone about our data protection policy

The AGM was a success! We passed the threshold for being quorate and were able to vote in the new constitution and elect the trustees for the next period. We agreed the trustee report and accounts, and I was able to thank all the relevant groups of people (members, volunteers, fundraisers and researchers). The new constitution improves the definition around what we do, and allows us to do a few more things, which we need to consider over the coming months. Next step is to get this registered with the Charities Commission.

After the formal part of the AGM we had a set of group discussions. Again, I was a little nervous about how this would work. I had taken part in a set of group discussions at work a few years ago which used the World Cafe style (http://www.theworldcafe.com/key-concepts-resources/world-cafe-method/) and this worked fairly well for sorting out ideas at that time.

I decided that it would be a good idea to seek members views on what else we could be doing as a group, and through conversations with the trustees there were a number of topics which we wanted opinions on (specifically: complex HSP, young people with HSP, their parents and Fund-raising). We added a further two categories to cover other issues, giving six topics in total) My sister had also used this format at her work, and had said that they work well if you have good facilitators to guide the discussion along. I wrote to a range of UK HSP researchers to ask if they or their colleagues would be happy to be facilitators, and fortunately they were!

That had all the key components in place, and the last challenges were working out how to brief the facilitators so that they knew what we were trying to get out of the discussions and how to introduce the method to all our members. I was really pleased when members just got stuck in to the discussions. We had three good rounds of discussions - round 1 identified and prioritised problems, round 2 identified any solutions for the highest priority problems, and round 3 looked to see which of those solutions the group could do.

After the discussions were complete, each of the facilitator gave a summary of the thoughts and findings from their group. I was quite pleased to find that there were a good number of common themes from across the topics, and we'll be using those findings to work out a forward plan at our next trustee meeting.