Tuesday, 27 June 2017

The 2017 Potato Pants Festival

Its only a few days to go till the 2017 HSP Support Group AGM, which is on Sat 1st July. You can see details of that here: http://hspgroup.org/index.php/meetings/68-saturday-1st-july-2017-annual-general-meeting-tally-ho-conference-banqueting-centre-pershore-road-birmingham-b5-7rn

This post is, however, about the 2017 Potato Pants Festival, which was on Sat 3rd June. I went there with my family, and it was really good fun. Actually I was there with my extended family as the festival was in the area where my wife's family live, so actually there were a fair few of us there.

The event was organised by Ian Bennett, chair of the Support Group, following various conversations he'd had with others about this. 2017 was the second year of the festival, and it felt like a well organised friendly affair. My kids spent most of the afternoon on the bouncy castles, whilst the rest of us sat on the grass listening to the music and having a good look around. The bands were playing in a big tent and there were plenty of people listening and then dancing.

During the changeover between the bands there were the now infamous potato pants races, where up to six people put on specially made trousers, loaded up with 10 potatoes down each leg. The race was a simple "run to that crate and back again" race, so a distance of about 50m. Why? The concept comes from a discussion Lori Renna Linton had with her daughter. You can watch her story in one of the links below. This conversation set off a chain of activities, and the potato pants festival is a descendant of this idea!

At the festival there were also a few stalls selling things, a bar, an ice cream stall, a hot dog/burger outlet, a few other games and events for people to take part in, and people were also free to roam around the farm.

I thought that the event was great. The music was really good, all the people were really friendly, and its a really nice way of raising awareness about HSP.

Of course, its not just about the fun, the event was to raise money, so there were lots of volunteers helping on the day, and I hope to find out at the AGM how much was raised for the charity. I'm looking forward to next year!

Some links about the festival:
Review 1: http://www.gigsandbands.com/potato-pants-festival-2017-review/ (with loads of pics)
Music 1: https://www.youtube.com/watch?v=cEHhorCYeM8&t=16s
Music 2: https://www.youtube.com/watch?v=-LH187HkZIc&t=1s

The original potato pants story: https://www.youtube.com/watch?v=56XdjtrpZlo&amp
Where else the idea is going: https://www.youtube.com/watch?v=ppJcPnPlpu0


Wednesday, 7 June 2017

Report: Juggling care and daily life

I take part in rare barometer voices surveys (http://www.eurordis.org/voices#studies). Recently the questionnaire was about balancing the different aspects of life with a rare disease. You can read the full report here: http://download.eurordis.org.s3.amazonaws.com/rbv/2017_05_09_Social%20survey%20leaflet%20final.pdf

Over 3000 people from across Europe responded to the survey, with a range of rare conditions, so the results are not HSP specific. My key takeaway points are:

Issues with daily activities:

  • More than 70% consider that they have difficulty with daily activities and tasks and that the disease impacts their motor and sensorial functioning;
  • More than 50% mention that their social life and their ability to cope with personal care activities is impacted by the disease, as well as their ability to control general behaviour and to take care of their finances;
  • More than 40% also have difficulty with understanding, learning and communicating with others.

Impact on daily life:

  • 85% of respondents says that the disease impacts upon several aspects of the health and everyday life
  • 42% spend more than 2 hours a day on care-related tasks.
  • A significant percentage of carers are providing intense caring: 30% spend more than 6 hours a day helping the patient

Rare disease information:

  • 75% of respondents declare that; finding necessary information on the disease, finding the right professionals, arranging and attending appointments with different service providers, and travelling to and from appointments, is time-consuming, and 64% of respondents consider that it is difficult to manage.
  • 75% of respondents consider that the level of knowledge among social workers, teachers and care givers is deficient because the diseases are rare and the situations very specific and complex.  Professionals do not seem sensitised to general issues that surround rare diseases, such as the difficulty to get a diagnosis or the number of care providers that can be involved in the management of a single disease.


  • 46% of People affected by a rare disease remain employed - working whilst caring or when affected by a rare disease represents a major challenge. 
  • 76% of the respondents declare that the fact they are affected by a rare disease has limited their professional choices; 67% also declare that the disease has limited them in being promoted.

Social impacts:

  • 54% declare that isolation from friends and family was caused or amplified by the rare disease.
  • More than half of the participants (52%) report that the disease triggered tensions between family members. 
  • In contrast, 45% declare that the rare disease has strengthened the family unit.
  • 37% of the respondents declare that they feel often (19%) or very often (18%) unhappy and depressed, compare to 11% of the general population.