Information, links & Myositis specialist clinics

[Jo-Goode]

Information, links & Myositis specialist clinics:

Admin to Myositis UK Healthunlocked - Jo Goode.

Diagnosed in 1994 with Dermatomyositis aged 25 and been a Charity Trustee/Treasurer for Myositis UK since 1999.

Jo Goode is also admin to Myositis Forum UK - UK only facebook group

facebook.com/groups/2432609...

Myositis UK - charity was established in 1986, membership is free, and this gives the opportunity to attend the yearly conference for yourself and one partner/carer, newsletters etc myositis.org.uk/index.asp

Myositis UK Facebook page:

facebook.com/Myositis-UK-42...

Myositis UK Twitter twitter.com/UKMyositis

Myositis UK "Team Muscle" facebook (fundraising page): facebook.com/MyositisSuppor...

Myositis UK -

JDM facebook page facebook.com/Juvenile-Derma...

Teddy Bo facebook page facebook.com/TeddyBoJDM/?fr...

Meetup's - hosted by Jo Goode & supported/funded by Myositis UK

(free to attend to Myositis UK members of Myositis UK)

Meetup page: meetup.com/MyositisUK/

Facebook page: facebook.com/MyositisUKMeetup/

Myositis UK are happy to support other informal meetup's around the UK - contact the office for information. myositis.org.uk/contact.asp

Help with prescriptions: nhs.uk/…/Healthcosts/Pages/...

Benefits: Welfare Advice via Myositis UK

Janet Horton can be contacted at,1 Fellstone Vale, Withnell, Chorley, Lancs, PR6 8UE.

She will be pleased to help Myositis UK members regarding welfare advice. You can also speak to her by telephone on a Monday or Friday between 10amand 12noon on 01254 832463. If you telephone please tell Janet you area Myositis UK member for she helps members of other organisations as well.

citizensadvice.org.uk/…/wha...

Myositis specialist clinic/centre

To request a NHS referral/second opinion via your GP (in the unlikely event your GP is uncooperative, a way round it is a one off private consultation with the Myositis specialist, and they will write to your GP on your behalf).

London Kings College - Team lead by Dr Patrick Gordon, Chairman of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK). Dr Gordon is a Myositis UK adviser Specialises in Dermatomyositis, Polymyositis, adult JDM, also holds joint Myositis/lung clinic for ASS at Guys Hospital. For NHS referral request via GP. Info on Dr Gordon & private referral/one off private appointment link: kingsprivate.com/…/rheumato...

Manchester Salford Royal - Dr Hector Chinoy Specialist in Dermatomyositis, Polymyositis and Adult Juvenile. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK). Myositis UK adviser

hectorchinoy.co.uk/index.php

Bristol - Dr Harsha Gunawardena. Specialist in Dermatomyositis, Polymyositis and Adult Juvenile. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK).

nbt.nhs.uk/…/a-z-consulta…/...

Private: spirehealthcare.com/…/our…/...

Liverpool - Professor Bob Cooper. Specialist in Dermatomyositis, Polymyositis and Adult Juvenile. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK). Adviser to Myositis UK.

liverpool.ac.uk/…/staff/mus...

Bath - Professor Neil McHugh, Royal National Hospital for Rheumatic Diseases. Specialist Dermatomyositis, Polymyositis and Adult Juvenile. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK).

bath.ac.uk/pharm…/contacts/...

Information Dermatomyositis & Polymyositis (DM/PM) myositis.org.uk/adult_derma...

Inclusion Body Myositis - IBM:

London - Dr Michael Rose, Kings College London. Member of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK).

kch.nhs.uk/service/a-z/musc...

London - QUEEN SQUARE CENTRE FOR NEUROMUSCULAR DISEASES

Dr Mike Hanna

Dr Pedro Machado

Dr Matt Parton

Members of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK). Advisor to Myositis UK

cnmd.ac.uk/…/clin…/Muscle/I...

Dr Adrian Miller - Hampshire

hampshirehospitals.nhs.uk/…...

Dr James AL Miller - Newcastle Biomedical Centre

newcastle-hospitals.org.uk/...

Information about IBM: myositis.org.uk/inclusion_b...

Juvenile Dermatomyoistis:

London - Great Ormond Street Hospital

Professor Lucy Wedderburn

Dr Clarissa Pilkington

Members of the UK Myonet group (the research/advocacy group of doctors and researchers in the UK). Advisor to Myositis UK

gosh.nhs.uk/medical-informa...

gosh.nhs.uk/medical-inform…...

Information about JDM: myositis.org.uk/juvenile_de...

JDM UK centres juveniledermatomyositis.org...

[tigerbam]

Hi Jo, I haven't been diagnosed with myositus, but am tired off being passed between depts with no outcome. I believe my symptoms are very close to this condition , Can you advise of any specialist that practice privately in Scotland

[Jo-Goode Administrator in reply to tigerbam]

Dr John McLaren, Rheumatologist The Victoria Hospital, Kirkcaldy, Fife. Has an interest in Myositis and see's over 50 Myositis patients, keeps in contact with Dr Hector Chinoy in Manchester to review difficult cases and will refer if needed. Attends Myonet meetings, so keeping up to date with new methods of treatment and research.

[roony13 in reply to Jo-Goode]

Hi Jo, I noticed Dr McLaren isn't on the website list of specialists. Is there a reason for that? Thanks x

[Jo-Goode Administrator in reply to roony13]

Sorry, I tend to keep the list for the facebook group (Myositis Forum UK) more up to date as easy to change. I met John McLaren at a Myositis meeting in Prague earlier this year.

[roony13 in reply to Jo-Goode]

Thanks Jo he is a lovely dr. x

[roony13 in reply to tigerbam]

Hi I have been referred to Dr McLaren and I am currently going through tests. He is really good and thorough.