Pics from Meeting 5/ 6.12.09

Patients Jouney - Conclusions

Common facts:

• First appointment is always with a GP;
• All referred to a Rheumatologist consultant;
• All diagnosed with RA after Blood tests;
• Rheumatologist always ask for more blood tests and x-rays;
• Follow ups by GP and Rheumatologist;
• Constant Blood tests after being diagnose with RA;

Less common:

• Being introduce to a Rheumatology Unit;
• Received more than leaflets about some medications;

Other:

• Times are different from patient to patient;
• Different monitoring programmes;
• Different disease progress;
• Sometimes Other diseases are diagnose;
• District nurse and Care nurse are introduce in extreme cases;

Extra:

• Methotrexate - can be taken orally or administered by injection (most common medication).

>>> Download previous images <<<

Patients Jouney - V

Patient V // Symptoms started after gave birth

Patient Comments:

• First GP very helpful (but didn't diagnose RA);
• Second GP good but not particularly "clued-up" on RA (saw this as a "old-age" disease);
• GP's didn't have knowledge of medication being prescribed;
• Current GP has a specialist interest in RA (wonderful);
• Well informed about RA (from father's experience);
• Meant to have hydrotherapy (didn't happened);
• Since being prescribed Etanercept has experienced improvements.

Patients Jouney - IV

Patient IV // Symptoms due the nature of work

Patient Comments:

• No advice offered other than leaflet on Methotrexate;
• Wish more information on diet, life style;
• Own research. Mainly via internet;
• Concern about reliability of some internet resources;
• Not warned that fatigue as part of symptom;
• Discussed the issue with the employer;
• If becomes bad was agreed to start work from home; (happens one time)
• No adjustments have been required at the workspace.

Patients Jouney - III

Patient III // Symptoms started after lift a heavy parcel

Patient Comments:

• Good education programme at the hospital;
• Partner able to provide support at home;
• Active exercising (walking, bicycling, etc.);
• Basic information leaflet supplied for drugs.

Patients Jouney - II

Patient II // Symptoms started after a traumatic and stressful situation (husband died)

Patient Comments:

• Mother suffer from severe RA;
• Big improvement after only 2 injections of Enbrel;
• Although a lot of damage had already been done to hands, fingers, toes and ankles;
• Able to self-inject after being teach by the district nurse;
• Took a Hydrotherapy course. First at the hospital and after at a fitness centre;
• Still attending the gym;
• Started to visit the local NHS Chiropodist every 6 weeks (because she started to be unable to cut toenails, etc.).

Patients Jouney - I

Patient I // Symptoms for 24 years before being diagnose

Patient Comments:

• Happy with the information given by GP and Rheumatologist;
• Get a lot of other data from internet;
• No extra help offered;
• Unaware of other services (like RA nurse);
• Used the NRAS helpline.

interview with stakeholder (best friend of sufferer) 29.11.09

sandra | diagnosed with Rheumatoid Arthritis at age of 9 (juvenile?), now is 25
(used fake name here on blog)

- young.. aware of what's happening in the world in terms of science and research so sees a correlation with ways to decrease symptoms and pain.

- at 22, started a new treatment 'anti TNF' (antibodies against inflamatory..) so feels much better but still had deformed hands and feet.

- but recently underwent surgery to fix that. and what able to run for the first time! and wear new shoes that looked normal.
did the operation privately (save up for it) to have it done between her law degree and her new job (see below). She did not want to wait years for the NHS and the time factor was important. also because her mom (teacher) would be off of work.

- after the surgery. she started talking about her arthritis and was more open about it (more comfortable, and feels better..)

- she remembers that when they were young and went touring in Italy to sing, her friends symptoms of pain would be worse.

- loves music, singing, playing the piano. she adapts the music to her fingers, because she can't reach an octave.
[special piano with special keys?]

- says that she can't do open windows on a damp night

- always had to be careful about weight and diet.. because she can't move for excercise..
no diet seemed to work! according to hannah (the girl i interviewed), at one point her diet was eating rice and maltesers only! :s

- she is not week, but feels embarassed.
wants to feel like she can do it all on her own. "i can carry my bag!"
doesn't like it when people baby her
but hannah now no longer asks her, and automatically carries her bag...
she does it before talking or asking so that it doesnt come up.. and acts normally about it
[role of good friends!]

- at school, she used to type everything

- has a special hand break and gear stick in her car

- currently works in a law firm and worries alot about what they think of her.
slow writing.. "theyre gonna think im not good enough"
"they all look clever and beautiful and in high heels, but i can't"

- at work: know her case - gets special care - special desk & seat - check up on her..

- likes to be integrated with society and be with everyone else. not isolated or in a special place.
not dwelling on it but getting on with things... talking to people..

Symptoms

Treatments

NRAS research

Interesting PDF's...

>>> NRAS - I want to work... - PDF link <<<

>>> NRAS - Mapping Project - PDF link <<<

contact links before i sleep :)

arthritis care meet in kingston:
Kingston Upon Thames Branch
The Alfriston Care Centre, Berrylands Road, Surbiton, Surrey
Meet on the third Tuesday of each month at 7.30pm
link here and there's contact details.

and a lecturer in penryn road/ kingston uni who did his phd on bacterial causes of arthritis, link here

ergonomics at the Design Museum

osteoarthritis simulation suit: