Review of Activities 2017

Review of activities in 2017

 

 

During 2017 the MdDS UK facebook group welcomed 46 new members who joined us in undertaking a range of activities regarding MdDS, rare conditions, balance conditions and social infrastructure issues such as the health benefits system.

In no particular order …

 

Several of us have been in contact with our MPs.  Thanks to Ellen and others, Jeremy Hunt probably knew more about MdDS than most and the social epidemiology of 'living rare' is gradually reaching the ears of parliament.  There has also been outreach to several clinical commissioning groups and NHS England etc.

 

Feedback was given to the second independent enquiry (conducted by the DWP about the DWP) re the health benefits system.  This was done via the UK MdDS group and by collecting information from UK migraine groups.  Personally I was not particularly impressed with their subsequent report but hope my MP will be able to table a question about the benefits system at some point.

 

Feedback was given to NICE re their draft 'suspected neurological conditions' guidelines, via collecting questions and comments from members of MdDS UK.  I registered as a stakeholder and combined this feedback with information/questions/comments from other rare conditions patients/family members and from people with migraine and other balance conditions.  Unfortunately the draft seems to demonstrate a lack of understanding about neuro/vestibular symptoms/conditions (especially those that don't show up via standard imaging techniques) so I hope they make substantial changes to it before it is published.   

 

Members of the group participated in the MdDS surveys developed jointly between two researchers (one in Australia and one in Antwerp).  One survey was for people who were motion triggered and one was for people with a-typical triggers or 'spontaneous' onset. (Some of us were involved in the development of these surveys). They were posted on Darius Rejali’s website and circulated around various physiotherapists and other clinicians, especially in the South West.  They were also signal boosted via the RE(ACT) Community, thereby contributing to awareness raising.  The results have now been published and it is great that there is now more understanding of the subtypes and the hormonal element of MdDS.

 

We continued to support the 'patient powered petition' calling for better training for doctors and better care for patients with vestibular/neuro-vestibular conditions.  If you haven’t already done so, please consider signing the petition and/or sharing it with your contacts.  Here’s the link:

https://www.change.org/p/world-health-organization-who-vestibular-patients-for-smarter-doctors-and-better-patient-care  

Likewise we continued to support the English edition of 'Dizzy Me - Light on Balance' which works towards the same aim.  

 

I did 4 'patient narrative' sessions with medical students about rare conditions (using MdDS as an example) and 1 with GPs in their first year of training.  These are always lively sessions and the delegates’ feedback is very positive.

 

Findacure invited me to do a 'lightening' talk at their conference on Rare Diseases Day in February.  The topic for the conference was 'drug repurposing' so I introduced the delegates to the benefits of also having the option to repurpose technology, by discussing the optokinetic treatment.  I am grateful to Dr Dai for permission to use his 2016 powerpoint slide and for other input.

 

Via Findacure I made a contact in wearables.  My initial interest was in adapting the 'Emma' (used to minimise tremors in Parkinson's disease) to 'stop the rock'.  However my contact's company makes wearables not to treat symptoms but to track them, which could be very useful in assessing outcomes from treatments/trials.  I have e-introduced her to Tim Hain and co.  I’m still interested in adapting the 'Emma' so if you know any tech whizzes, or anyone who works for Microsoft, please let me know! [Update, Findacure have given me some more contacts in wearables so this is a work in progress …]

 

Via the Rare Revolutionary Magazine Community and other fora I am also on the hunt for an early career neural-ophthalmology researcher to look into the link between MdDS and being born with a squint/having convergence insufficiency/no binocular vision.  Anecdatally prism glasses and other adaptive eyewear seems to be both symptom modifying and condition modifying for people with MdDS.  Interestingly the same seems to be the case for some people diagnosed with vestibular migraine.  Again, if you have any contacts that could help with this, please let me know.

 

We applied to become a member of Genetic Alliance UK.  Reluctantly they had to turn us down but I have asked if Familial MdDS can be included and am waiting to hear back from them.

 

Progress with the UK Genome Project was slow, mostly due to further changes in the way this project was being delivered.  I was able to donate data to this project in August 2017. [Update: this project is being extended so I will contact Genomics England again, to see if they can include MdDS in some way.]

 

I took part in the pilot phase of a Rare Disease UK survey into mental and emotional health issues for people with rare conditions.  Subsequently members of MdDS UK completed this survey and the results were published this year (2018).  Group members have also taken part in the Rare Barometer Voices surveys which cover a wide range of health and social care issues.

 

At the Findacure conference I was approached by Costello Medical, a consulting company with a division dedicated to Rare Conditions, who offered us pro-bono support.  Although the initial project we discussed wasn't feasible for them, they helped me to make the poster and 'patient journey' infographic which we presented at the Cambridge Rare Diseases Network Summit in October.  It was great to welcome Prof Floris Wuyts and Dr Darius Rejali to the summit and the poster generated some interesting questions from a variety of delegates.  

 

The remit for the patient journey infographic was to 're-imagine' the patient journey which led me to envisage a mobile treatment unit.  Local or home treatment has to be the goal for MdDS, along with having access to free-at-the-point-of-delivery treatment.

Throughout 2015/16 Action for MdDS and its members have been busy raising awareness and the profile of this condition throughout the UK.

Here’s a sample of activities in the UK in 2015/16:

 

  • ‘Patient narrative’ events with over 50 medical students/tutors

  • Extensive networking amongst clinicians and other professionals via Findacure, RDUK, etc.

  • The selection/sponsorship of a clinician to send for training with Dr Dai – Mr Chris Bowes.

  • Contacted GARD/NIH to ask them to update their information about MdDS resulting in this: https://rarediseases.info.nih.gov/gard/6959/mal-de-debarquement/case/53978/case-questions

  • Blogs for Findacure (over 1,000 views although not all the blogs were about MdDS).  The June blog was published on Dr Hain’s MdDS page

  • Blog for RDUK (over 1,400 views)

  • Article for British Medical Journal (about MdDS/invisible and rare conditions) due to be published in May

  • Liaison with VEDA and other professional patient organisations

  • Liaison with relevant charities such as The National Brain Appeal

  • Promotion of all relevant ‘patients involved’ initiatives

  • Sponsorship of the Findacure Essay Competition

  • Various articles in the press

Legal disclaimer: No information on this site should be taken as medical  advice and we are unable to formally endorse any treatment protocols.  Excellent information about MdDS can be found at Dr Tim Hain’s site, which is updated regularly.

 

Action for MdDS UK - is run by volunteers and welcomes offers of support. The views expressed in the published papers and other information on this site do not necessarily reflect the views of the co-founders of Action for MdDS.  We are also not responsible for the content of other MdDS sites, groups or papers that are linked to or discussed on this website. 

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Many thanks to IFDNRG who have sponsored our Domain name for 2016.
Our site is dedicated in the memory of Steve Parsons - many thanks to his family and friends for the kind donations collected in his memory to keep this website running. Steve had MdDS since for 11 years and sadly passed away in 2015 from an unrelated condition.

 

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