Review of 2022

Annual Review: 2022

Its time for my annual reflection on thoughts and activities throughout 2022.

Knowledge

I feel that most of my knowledge gains this year have come from outside the HSP world - appreciating and understanding different perspectives on acceptance, disclosure and that side of things. 

I'm also using my annual survey to explore areas that don't seem to be addressed, with this year adding questions on menstrual health.

Symptoms

My key word for symptoms for 2022 is depression, although as noted in a recent post this is more to do with my life outside the HSP world than to do with my progression. 

Otherwise, the pattern of 2021 has continued - increased fatigue, needing to use arms more to stand up, needing to sit down more often, generally walking slower and with more effort. This years review with the neurologist put the start point for spasticity medication in clearer focus - when I start to find things difficult to do rather than just slower. 

This Blog

I'm also pleased with the continuing readership of this blog, with a similar audience and similar popular posts. One of the consequences of my depression is that I have had a bit less enthusiasm for writing posts this year, and its has been more challenging to keep to my personally set target of two posts a month.

However, I'm pleased that blog posts continue to be linked to and used within other HSP and RareDisease communities. Thank you to all readers, including those who make comments appreciating what I say. Such feedback reinforces the reasons for writing the blog. 

Survey

The annual pattern of my surveys is well established, and I am using the same seven languages as 2021. As in recent years I have collaborated across countries getting the questions right. Results will be out on 28th Feb after the majority of analysis during January.

Community Contribution

HSP Community activities for 2022 included:

• Representing the UK at EuroHSP
• Patient Journey for ERN: https://www.ern-rnd.eu/patient-journey-hereditary-spastic-paraplegias-hsps/
• Carrying on with the Enable disability network at work (Accessibility Challenge)
• Involvement with the ED&I group at the Institute of Acoustics
• Analysing and reporting the results of my survey to share with the HSP world

The main element of my community contribution comes from being chair of the HSP support group. Whilst we are getting various issues resolved, there are still many to go. I'm working with the rest of the trustees to ensure that the group continues to support its members in the most appropriate way - please reach out to help us.

HSP Patient Journey

One of my areas of work* in HSP has now been published. I've been working with friends at EuroHSP to help develop a patient journey for people with HSP for the European Reference Network for Neurological Diseases.

They have been running a project for a while to try and illustrate aspects of neurological diseases. I have been able to use the results of my surveys and conversations with many people who have HSP to try and get the views of those with HSP down.

You can see this here: https://www.ern-rnd.eu/patient-journey-hereditary-spastic-paraplegias-hsps/

The text at the top of this page describes the aim:

Patient Journeys  are info-graphical overviews that visualize patients’ needs in the care of their rare disease. Because Patient Journeys are designed from the patient’s perspective, they allow clinicians to effectively address the needs of rare disease patients.

Patient Journeys consider that patients’ needs may differ at different stages of the disease – e.g., initial symptoms vs. treatment. They also reflect the patients’ personal experiences, which may vary depending on the person, clinic and country.

ERN-RND considers Patient Journeys working documents that patients and clinicians can use together to identify gaps in care and adapt care pathways to better meet the needs of patients living with these conditions. Patient Journeys can therefore be seen as a first step toward systematic patient engagement in the design of care pathways.

In addition, Patient Journeys are a useful resource for patients, families, non-specialist clinicians, and the general public to understand the care needs of patients living with a rare neurological disease.

Each line on the journey covers a different aspect - the disease line gives details about HSP, the clinic line addresses different issues which might be encountered when talking with healthcare and other relevant professionals. The challenges line gives some of the challenges experienced by people with HSP at the moment. The goals line sets out some objectives which clinicians can hope to deliver in combination with people who have HSP.

There is a second sheet of the journey, which uses words to describe in a a little more detail these aspects.

I was quite pleased when talking about the graphics to make sure that we covered walking sticks, walking frames and wheelchairs. The team within the ERN were very accommodating to these ideas.

(*Note - thats work in the task-based sense. This, like my support group work is all voluntary)