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<strong>Rheumatology</strong> <strong>Nursing</strong>:<br />

A <strong>Journey</strong> <strong>of</strong> <strong>Discovery</strong><br />

Jackie Hill<br />

Presenter Disclosure Information:<br />

Declaration <strong>of</strong> interest<br />

This speaker has no conflicts <strong>of</strong> interest


1970’s<br />

• In the 1970’s hospitals had rheumatology<br />

wards’ & rheumatologists<br />

• <strong>Rheumatology</strong> <strong>Nursing</strong> was not recognised<br />

as a specialty in the UK, classed with<br />

‘geriatric’ nursing


1980’s – <strong>The</strong> <strong>Journey</strong> Begins in the UK!


RCN <strong>Rheumatology</strong> <strong>Nursing</strong> Forum<br />

• Forum started in 1981<br />

• 1 st meeting in Manchester elected:<br />

Chair - Sally Chesson<br />

Secretary - Vickie Stephenson<br />

Treasurer - Joan Ball<br />

• Hold 2 x 1.5 day conferences each year<br />

• Set up course for rheumatology nurses<br />

• Newsletter


1985<br />

• Vickie Stephenson realised that rheumatology<br />

care was multidisciplinary<br />

• Went on to establish a multi-pr<strong>of</strong>essional<br />

organisation – BHPR and became its first<br />

President<br />

• <strong>The</strong>se two organisations heralded the<br />

emergence <strong>of</strong> rheumatology as a truly<br />

recognised MDT specialty


New Roles<br />

Bed bath<br />

anybody?<br />

• Interesting to note that the RCN RNF did<br />

not really accept the concept <strong>of</strong><br />

rheumatology nurse working from out<br />

patient departments<br />

• Real rheumatology nurses worked at the<br />

bed side!!!


1980’s - New Roles<br />

• Too many patients and not enough<br />

rheumatologists<br />

• In Leeds nurses employed to work in out<br />

patient departments to take clinical<br />

measurements in clinical drugs trials


<strong>The</strong> Leeds Experience<br />

• Began to take on responsibility for disease<br />

management and PE<br />

• Patients began to request nursing<br />

consultations - Our first nurse-led clinics<br />

• 1985 - ‘<strong>Nursing</strong> clinics for arthritis’<br />

• 1986 – ‘Patient evaluation <strong>of</strong> a rheumatology<br />

nursing clinic’


By the End <strong>of</strong> 1980’s<br />

• <strong>Rheumatology</strong> <strong>Nursing</strong> Clinics began to<br />

appear in the UK<br />

• ENB 983 Advanced Course in<br />

<strong>Rheumatology</strong> & Rehabilitation<br />

• One month certificated course


1989 Standards <strong>of</strong> Care – Rheumatic<br />

Disease <strong>Nursing</strong>, Scutari Press


1990’s – A Time <strong>of</strong> Consolidation<br />

• Many more NLC appeared, nurses began publishing<br />

papers describing the work they did<br />

• 1994 - Val Arthur<br />

<strong>Nursing</strong> care <strong>of</strong> people with rheumatoid arthritis. BJN<br />

• 1996 – Sarah Ryan<br />

Defining the role <strong>of</strong> the specialist nurse. Nurs Stand<br />

• 1999 – Anne Sutcliffe<br />

A regional nurse led osteoporosis clinic. Nurs Stand


An evaluation <strong>of</strong> the effectiveness, safety and<br />

acceptability <strong>of</strong> a nurse practitioner in a rheumatology<br />

outpatient clinic<br />

• 70 RA patients random allocation CR or NS<br />

(n=35)<br />

• Seen on 6 occasions over a 12 month period<br />

• Battery <strong>of</strong> outcome measures &<br />

questionnaires<br />

Hill J, Bird HA, Harmer R, Wright V, Lawton C (1994) Br J Rheumatol, 33:283-<br />

288.


Assessment CR Clinic CNS Clinic<br />

Biochemical PV ** **<br />

CRP = =<br />

Clinical Articular Index * ****<br />

Morning stiffness = *<br />

Pain = **<br />

Physical Function = =<br />

Psychological Anxiety = ***<br />

Depression = **<br />

Overall status = ***<br />

Knowledge Overall = ****<br />

Pat Satisfaction Overall = ****<br />

= no change *improvement significant 5% level, ** improvement significant 1% level<br />

***improvement significant 0.1% level<br />

****improvement significant 0.01% level


1990’s - Consolidation<br />

• Nurses taking on new responsibilities<br />

• Needed to access to new knowledge and skills<br />

• 1995 – IAI course began Cannock Chase<br />

Hospital<br />

• 1999 - Sarah Ryan and Andy Hassell produced<br />

the <strong>Rheumatology</strong> <strong>Nursing</strong> Masters course at<br />

Keele University


Computerisation<br />

Kind permission from ‘Little Dog Laughed’


Please!


2000 – New millennium, new leaps<br />

forward and few retrograde steps!


2000’s – Leaps Forward<br />

• 1997 AR UK set up AHP Working Party<br />

• Undertook workshops and national survey<br />

• 203 nurses responded<br />

• Published findings in 2001


Defining the Extended Clinical Role for<br />

Nurses in <strong>Rheumatology</strong> in the UK<br />

Functions<br />

% <strong>of</strong> Nurses who<br />

Routinely Perform<br />

these Functions<br />

Give information and advice to patients 82<br />

Read/record blood results 73<br />

Give information and advice to relatives 71<br />

Refer to other health pr<strong>of</strong>essionals 58<br />

Provide counselling to patients 54<br />

Run drug monitor clinics 53<br />

Order clinical investigations 52<br />

Carr et al 2001


2000’s<br />

• 20% <strong>of</strong> nurses had significantly extended roles<br />

• Joint injections<br />

• Reading x-rays<br />

• Running specialist clinics<br />

• Recommending treatment changes to<br />

rheumatologists and GPs<br />

• Research<br />

• Teaching


2001 2003 & 2009 2004<br />

Telephone<br />

Advice 2006


<strong>The</strong> Nurse Consultant Role –<br />

Another Leap Forward<br />

Brought about by:<br />

• Limitations in career structure<br />

• Experienced nurses leaving the pr<strong>of</strong>ession<br />

• Lack <strong>of</strong> expert clinical leadership


<strong>The</strong> <strong>Rheumatology</strong> Nurse Consultant<br />

• In 1999 aim was for 1000 Nurse Consultants by<br />

2004<br />

• In 2000 Sarah Ryan became the first RNC in the<br />

UK<br />

• >10 at the present time


What Does the Role Involve?<br />

Defined criteria for the role<br />

• 50% in direct clinical care<br />

• Education<br />

• Research<br />

• Leadership


An Evaluation <strong>of</strong> Nurse Consultant Roles<br />

• In depth interviews and questionnaire survey<br />

• 528 Nurse Consultants identified 419(79%) response<br />

• 53% worked in a clinically based specialty area (A&E<br />

or care <strong>of</strong> the elderly)<br />

• 23% mental health<br />

• 11% condition based specialty<br />

• 8% midwifery<br />

• 5% community/primary care<br />

Guest et al 2004. An evaluation <strong>of</strong> the impact <strong>of</strong> nurse, midwife and health visitor<br />

consultants. Kings College, London


An Evaluation <strong>of</strong> Nurse Consultant Roles<br />

• Broad target <strong>of</strong> spending 50% directly with patients<br />

• 43% were attaining this<br />

• 48% claimed a high impact on the standards <strong>of</strong> care<br />

patients’ received<br />

• 40% improved follow up care


2000 Retrograde Steps -<br />

Justifying the Role <strong>of</strong> the CNS<br />

• 2006 funding deficit within the NHS – Trusts were<br />

required by Government to balance their books!<br />

• Simultaneously, job evaluations and pay awards<br />

resulting from Agenda for Change were<br />

implemented<br />

• CNS posts identified as potential areas for cost<br />

saving<br />

• Reductions in wage bill and help with the black hole<br />

in pensions funds


2000 - Justifying the Role <strong>of</strong> the CNS<br />

• Posts were lost in rheumatology but not known<br />

how many<br />

• Lack <strong>of</strong> cost effectiveness evidence for the CNS<br />

role in rheumatology from the UK<br />

• Research had gained impetus during the 1990’s<br />

& this decade


A randomized comparison <strong>of</strong> care provided by a clinical nurse<br />

specialist, an in-patient team, and a day patient team in RA<br />

• RCT into 3 groups<br />

• 210 RA patients difficulty with function<br />

• Clinical assessments recorded 0, 6, 12, 26 and 52<br />

weeks<br />

• Satisfaction VAS at week 6 all patients and at week<br />

12 for CNS patients<br />

Tijhuis et al AC&R 2002;47:525-31


Outcome Measures<br />

• Health Assessment Questionnaire*<br />

• McMaster Toronto Arthritis Patient Preference Disability<br />

Questionnaire*<br />

Secondary measures<br />

• RAND 36<br />

• RAQoL<br />

• Health Utility Rating Scale<br />

• DAS<br />

• VAS<br />

(QoL)<br />

(QoL)<br />

(Health Utility)<br />

(Disease Activity)<br />

(Patient Satisfaction)<br />

*Primary Outcome Measures


Results From all 3 Studies<br />

• All 3 groups improved FS, QoL, Health Utility<br />

• Care from the CNS has similar clinical outcome in<br />

comparison with inpatient and day patient team care<br />

• <strong>The</strong> results <strong>of</strong> from the 52 week study remained<br />

stable until 104 weeks<br />

• Total cost per patient 2 years:<br />

CNS: €11,572 Day Care: €16,896 In pat: €22,449


Outcomes for Patients with RA: A <strong>Rheumatology</strong> Nurse<br />

Practitioner Clinic Compared to Standard Outpatient Care<br />

80 patients from Consultant clinic<br />

RNP clinic<br />

39 RA patients<br />

JHD clinic<br />

41 RA patients<br />

Weeks 0, 2, 12, 24, 36, 48<br />

Hill et al Musculoskeletal Care 2003;1:5-20


RA Cohort<br />

RNS (n=41)<br />

JHD (n=36)<br />

Fatigue p


Impact <strong>of</strong> a rheumatology expert nurse on the well<br />

being <strong>of</strong> patients attending a drug monitoring clinic<br />

• Single blind RCT<br />

• 71 RA patients<br />

• Starting a new DMARD<br />

• Randomised to a CNS (n=36) clinic or an<br />

outpatient nurse (n=35)<br />

• Visits at 0, 3, 7, 12 months<br />

Ryan et al J Adv Nurs 2006;53:277-86


End Point Results<br />

• RAI change score improved 1.8 in CNS group<br />

and deteriorated 0.3 in the CG (NS)<br />

• DAS scores improved significantly CNS but no<br />

change CG, difference significant (p


Do OA Patients Gain Additional Benefit from Care<br />

from a Clinical Nurse Specialist? – An RCT<br />

100 Patients from Consultant Clinic<br />

RNS clinic<br />

51 OA patients<br />

JHD clinic<br />

49 OA patients<br />

Weeks 0, 16, 32, 48<br />

Hill et al 2009 <strong>Rheumatology</strong>;48:664


Results - Osteoarthritis Study<br />

• Better outcomes for pain, morning stiffness,<br />

physical function and self-efficacy RNS group<br />

• Patient knowledge and satisfaction favoured<br />

the RNS (p>0.05)<br />

• Patients gained additional benefit as they were<br />

better informed about their disease and<br />

significantly more satisfied with their care


2010 and onwards……


<strong>The</strong> effectiveness <strong>of</strong> nurse-led care in people<br />

with RA : A systematic review<br />

Ndosi et al. Int J Nurs Stud 2011: 48:642-654<br />

• Only found 7 articles describing 4 RCTs<br />

• Meta analysis on 431 patients<br />

• Most effect sizes inconclusive<br />

• AI, QoL, Patient Knowledge (p


Who Responded?<br />

• 274 rheumatology nurses<br />

• 262 (96%) female<br />

• Average age was 48 yrs (26 – 71)<br />

• 113 (41%) were 50 yrs or older<br />

• Nurses qualified 24 yrs (2 – 48 yrs)


Number <strong>of</strong> nurses<br />

<strong>Nursing</strong> Qualifications<br />

140<br />

47%<br />

47%<br />

120<br />

100<br />

80<br />

60<br />

40<br />

20<br />

0<br />

36%<br />

33%<br />

26%<br />

22%<br />

Diploma Undergrad Masters PhD Teaching Prescribing<br />

Qualifications Obtained


% Nurses<br />

Hours Allocated for Telephone<br />

Helpline<br />

35<br />

30<br />

25<br />

20<br />

15<br />

10<br />

5<br />

0<br />

0.5 - 2 >2 - 4 >4 - 6 >6 - 37.5<br />

Hours per Week


Percent<br />

Non Clinical Activities<br />

70<br />

60<br />

50<br />

40<br />

30<br />

20<br />

10<br />

0<br />

Essential sp clinical<br />

admin<br />

Essential non-sp<br />

clinical admin<br />

Non-essential non<br />

clinical admin<br />

Team/PD


Pandora (s<strong>of</strong>tware workload modelling tool)– Susan<br />

Oliver & Alison Leary<br />

BJN: 2012:2(1):32-37


Pandora study<br />

• Nationwide study<br />

• 99 nurses who recorded their activities<br />

• 3324 intervention events representing 101<br />

nursing days<br />

• 2,227 clinical intervention


Top 5 Outcomes<br />

• 21% alleviation <strong>of</strong> suffering - Physical assessment and<br />

specialist symptom management<br />

• 19% assessing and meeting information needs<br />

• 14% rescue work particularly in drug therapy<br />

• 11% alleviation <strong>of</strong> psychological suffering<br />

• 11% access to key contact / knowledgeable<br />

pr<strong>of</strong>essional or brokering rapid access to other<br />

pr<strong>of</strong>essionals


AR UK Project Grant<br />

Started February 2008 last patient completed March 2011


Clinical outcomes<br />

• DAS28 – Primary outcome<br />

• Pain, fatigue and stiffness<br />

• Quality <strong>of</strong> life (RAQoL)<br />

• Functional ability (HAQ)<br />

• Self-efficacy (ASES)<br />

Economic Evaluation<br />

• EQ5D – Quality adjusted<br />

life Years (QALYs)<br />

• Cost - NHS costs,<br />

Healthcare costs, <strong>Society</strong><br />

costs<br />

• Psychological well-being<br />

(HADS)<br />

• Satisfaction with care (LSQ)


622 Invited<br />

371 - No response<br />

29 - Not eligible<br />

41 - Declined<br />

181 Randomly assigned<br />

91 randomised to NLC<br />

- 9 protocol deviations<br />

90 randomised to RLC<br />

-14 protocol deviations<br />

82 PP analysis<br />

91 ITT analysis<br />

76 PP analysis<br />

90 ITT analysis


Results<br />

• Mean change in average DAS 28 significantly<br />

greater NLC than the RLC group<br />

• NLC higher patient satisfaction<br />

• Lower health care costs<br />

• QALYs favoured RLC<br />

• Uncertainty over cost-effectiveness


Geriatric Nurses<br />

Became Organised RCN RF / BHPR<br />

Conferences Papers and Text Books<br />

Psychological Support<br />

Referrals<br />

Courses to MSc Level<br />

Teach Self Management<br />

Telephone Advice Lines<br />

Practice Development<br />

Physical Examination Order / Interpret Investigations<br />

Disease Management<br />

Nurse Consultants<br />

Admitting to Wards<br />

Clinical Nurse Specialists<br />

Intra Articular Injections<br />

Teaching Leadership Mentoring<br />

Prescribing High Quality Research<br />

Nurse - Led Services


What About the Future?<br />

• Going to be difficult times ahead, no idea<br />

how the new NHS will pan out<br />

• Could adversely effect rheumatology<br />

• Need to be vigilant<br />

• Number educational courses may decline<br />

• Change brings opportunities


What About the Future?<br />

• Need more research to produce the<br />

evidence for rheumatology nursing<br />

• Need to use mixed methodology<br />

• Statistical model such as the Structural<br />

Equation Model (SEM) could be <strong>of</strong> use


Direct effects on Quality <strong>of</strong> Life in OA<br />

Anxiety<br />

0.57<br />

Pain<br />

0.34<br />

Quality <strong>of</strong> Life<br />

0.81<br />

Function<br />

Number <strong>of</strong> comorbidities<br />

Duration <strong>of</strong><br />

disease<br />

0.22<br />

Kind permission Dr Anne-Maree Keenan<br />

Age


Physical and Psychosocial Effects on QoL in OA<br />

Keenan et al, 2008<br />

0.48<br />

Anxiety<br />

0.57<br />

Pain<br />

0.39<br />

0.45<br />

0.34<br />

Quality <strong>of</strong> Life<br />

0.81<br />

Function<br />

0.33<br />

Number <strong>of</strong> comorbidities<br />

0.17<br />

0.18<br />

Duration <strong>of</strong><br />

disease<br />

0.22<br />

0.22<br />

0.18<br />

0.15<br />

Age<br />

Kind permission Dr Anne-Maree Keenan


Making a Difference


• Dr Jill Firth<br />

• Consultant Nurse in<br />

<strong>Rheumatology</strong><br />

• Senior Research<br />

Fellow<br />

• Seminal research on<br />

foot ulceration – 1/10<br />

RA will acquire a foot<br />

ulcer


• Pr<strong>of</strong>essor Sarah Hewlett<br />

• 1 st Pr<strong>of</strong>essor<br />

<strong>Rheumatology</strong> & <strong>Nursing</strong><br />

• Consultant Nurse<br />

• Fatigue<br />

• Ensuring patients are<br />

involved in the research<br />

process<br />

• Helping patients cope with<br />

arthritis


• Pr<strong>of</strong>essor Candy McCabe<br />

• 2 nd <strong>Nursing</strong> Pr<strong>of</strong>essor<br />

• Consultant Nurse<br />

• Work on regional pain<br />

syndrome<br />

• Chronic Unexplained Pain


• Dr Mwidimi Ndosi<br />

• Researcher & practitioner<br />

in <strong>Rheumatology</strong><br />

• Outcomes from nurse led<br />

clinics<br />

• Economic evaluation<br />

• Educational Needs<br />

Assessment Tool


• Susan Oliver<br />

• Nurse Consultant<br />

• Past Chair <strong>of</strong> RCN RF<br />

• Leadership many <strong>of</strong> the<br />

guidelines produced<br />

• Prolific author<br />

• Very politically aware!


• Dr Sarah Ryan<br />

• 1 st Nurse Consultant<br />

• Editor Musculoskeletal<br />

Care<br />

• MSc course leader<br />

• Prolific author


“Change comes from small initiatives<br />

which work, initiatives which imitated,<br />

become the fashion. We cannot wait for<br />

great visions from great people, for they<br />

are in short supply at the end <strong>of</strong> history.<br />

It is up to us to light our own small fires in<br />

the darkness”<br />

Charles Handy (1994) Irish author and philosopher


Welcome to<br />

<strong>The</strong> 2012<br />

DROITWICH LECTURE


LIFETIME ACHIEVEMENT<br />

Dr Jackie Hill:<br />

For outstanding service<br />

to rheumatology and<br />

allied health<br />

pr<strong>of</strong>essional working<br />

AWARDED BY THE BHPR


Presentation on behalf <strong>of</strong><br />

EULAR <strong>Nursing</strong> Task Force


2012<br />

Prizes and Awards<br />

Recognising and celebrating<br />

achievements and innovations<br />

that change the face <strong>of</strong><br />

rheumatology


Chris Moran poster prize


<strong>The</strong> winner <strong>of</strong> the Chris Moran Poster Prize<br />

2012 is:


BHPR/Arthritis Research UK<br />

research silver medal


BHPR/Arthritis Research UK<br />

research UK silver medal<br />

research prize<br />

Miss Victoria Manning,<br />

King's College London, London<br />

Physical inactivity among UK adults with rheumatic<br />

diseases: an evaluation <strong>of</strong> physical activity<br />

participation, recommendation and preferences


Physical inactivity among UK<br />

adults with rheumatic diseases:<br />

an evaluation <strong>of</strong> physical activity<br />

participation, recommendation<br />

and preferences<br />

Victoria Manning


Physical Activity Audit<br />

UK physical activity guidelines (2011)<br />

2008, 2009 NICE guidelines<br />

508 patients with rheumatic conditions<br />

Inner city UK hospital<br />

2-page questionnaire (IPAQ)<br />

61% met the 2011 PA guidelines<br />

27% entirely inactive<br />

48% had never discussed physical activity<br />

with a healthcare pr<strong>of</strong>essional<br />

50% would welcome advice


Thank you!<br />

• All participants<br />

• Dr. Lindsay Bearne, King’s College London<br />

• Pr<strong>of</strong>. Mike Hurley, St. George’s University <strong>of</strong> London<br />

• Pr<strong>of</strong>. David Scott, King’s College London<br />

• <strong>Rheumatology</strong> Team, King’s College Hospital<br />

• Physiotherapy Research Foundation, Chartered<br />

<strong>Society</strong> <strong>of</strong> Physiotherapy


Arthritis Research UK Awards


Arthritis Research UK<br />

Physiotherapy Silver Medal Prize<br />

Dr Jonathan Hill,<br />

Keele University, Stoke on Trent<br />

Comparison <strong>of</strong> stratified primary<br />

care management for low back<br />

pain with current best practice<br />

(STarT Back): a randomised<br />

controlled trial


Arthritis Research UK Podiatry<br />

Silver Medal Prize<br />

Dr Michael Backhouse,<br />

Division <strong>of</strong> Musculoskeletal Disease,<br />

University <strong>of</strong> Leeds, Leeds<br />

Factors predicting the outcome <strong>of</strong><br />

foot and ankle surgery in patients<br />

with rheumatoid arthritis


Factors predicting the outcome <strong>of</strong><br />

foot and ankle surgery in patients<br />

with rheumatoid arthritis<br />

M.R. Backhouse<br />

Division <strong>of</strong> Rheumatic and Musculoskeletal Disease,<br />

University <strong>of</strong> Leeds,<br />

Leeds Institute <strong>of</strong> Molecular Medicine


Background<br />

Epidemiology<br />

<strong>of</strong> foot and<br />

ankle surgery<br />

in RA<br />

Generation <strong>of</strong> Candidate<br />

Factors<br />

Background<br />

Perception <strong>of</strong> outcome from<br />

patient perspective<br />

Rheumatoid arthritis has a pr<strong>of</strong>ound impact on foot and<br />

Validation <strong>of</strong> Activity Monitors<br />

ankle (Michelson et al 1994, Grondal et al 2008, Helliwell 2005, Williams 2007)<br />

Longitudinal<br />

evaluation <strong>of</strong><br />

candidate factors<br />

ability to predict<br />

surgical outcome<br />

Study Type:<br />

Registry data<br />

Leeds Institute <strong>of</strong> Molecular Medicine<br />

Foot and Ankle surgery accounts for 1/3 <strong>of</strong> lower limb<br />

surgery in RA (Weiss et al 2006)<br />

Modified Delphi Process<br />

Surgical outcomes vary considerably and are <strong>of</strong>ten<br />

Qualitative Interviews<br />

suboptimal (Hamalainen et al 1997)<br />

Validation Study<br />

Aim<br />

Prospective<br />

cohort study


Methods<br />

• Prospective<br />

cohort<br />

• Baseline<br />

assessment <strong>of</strong><br />

candidate factors<br />

Methods<br />

• 12 month follow<br />

up<br />

• Exploratory<br />

analysis <strong>of</strong><br />

candidate factors<br />

conducted using<br />

CART analysis<br />

Leeds Institute <strong>of</strong> Molecular Medicine


Results<br />

CART analysis produced decision trees for<br />

different aspects <strong>of</strong> outcome<br />

Although predictor variables varied, three<br />

key constructs emerged:<br />

– Patients with higher baseline pain showed<br />

more improvement than those with lower<br />

pain<br />

– Patients with the severest deformity failed<br />

to improve as much as patients with less<br />

extensive foot deformity<br />

– Patients with tighter disease control<br />

showed greater improvement than those<br />

with less well controlled disease<br />

Requires validating in external cohort<br />

Leeds Institute <strong>of</strong> Molecular Medicine


Acknowledgements<br />

Dr Anthony C. Redmond<br />

Dr Anne-Maree Keenan<br />

Dr Philip S. Helliwell<br />

Dr Elizabeth M.A. Hensor<br />

Dr A. Isdale<br />

Dr A. Gough<br />

A. Emmerson<br />

A. Gill<br />

C. Bennett<br />

B. Starss<br />

P. Briggs<br />

A. Budgen<br />

C. Chebil<br />

C. Mann<br />

Dr D. Walker<br />

P. Heslop<br />

J. Madden<br />

D. Lavallette<br />

Dr L. Hordon<br />

Dr M. Green<br />

N. Harris<br />

M. Peat<br />

J. Pickard<br />

R. Monkhouse<br />

T. Nazzar<br />

Dr Z. Karim<br />

Leeds Institute <strong>of</strong> Molecular Medicine


Arthritis Research UK<br />

Occupational <strong>The</strong>rapy Silver<br />

Medal Prize<br />

Ms Kate Hackett,<br />

Newcastle University, Newcastle<br />

Functional impairment and<br />

primary Sjogren’s syndrome: a<br />

case for occupational therapy?


Functional impairment and primary Sjögren’s<br />

syndrome: A case for occupational therapy?<br />

Kate Hackett<br />

• pSS second most common autoimmune<br />

rheumatic disease<br />

• Affects secretary glands e.g. eyes and<br />

mouth<br />

• Fatigue, autonomic dysfunction, pain,<br />

sleep disturbance, depression,<br />

cognitive impairment<br />

• Impact on self care, productivity and<br />

leisure<br />

-work, eating, sexual function,<br />

functional mobility, concentration,<br />

engaging in social activities<br />

• Associated costs e.g. reduction in<br />

employment<br />

Hackett et al. Occupational therapy: A potentially valuable intervention for people with primary<br />

Sjogren's syndrome, <strong>British</strong> Journal <strong>of</strong> Occupational <strong>The</strong>rapy (in press)


Study<br />

• Measured impact <strong>of</strong> pSS symptoms on functional ability<br />

(Improved HAQ) and relationships between functional ability,<br />

systemic disease activity and patient reported symptoms<br />

• Responses received from 69 well characterised patients<br />

• Data compared with 69 age and sex matched healthy controls<br />

• pSS patients had a reduced capacity in carrying out a wide<br />

range <strong>of</strong> everyday activities compared with controls<br />

• Reduced function correlated strongly with fatigue, depression,<br />

pain, disease activity and impaired HR-QoL<br />

Hackett KL et al Functional impairment in primary Sjogren's syndrome. Arthritis Care<br />

and Research (in press)


A Case for Occupational <strong>The</strong>rapy<br />

• Effective at improving function in other<br />

conditions e.g. RA (Steultjens et al 2004)<br />

• Addresses specific areas <strong>of</strong> functional<br />

impairment<br />

• Sleep, pain, fatigue, low mood, daily activity<br />

management<br />

• Many pSS patients do not have routine<br />

access to OT<br />

• OT could facilitate improvement in function,<br />

quality <strong>of</strong> life and costs associated with the<br />

disease


Arthritis Research UK <strong>Nursing</strong><br />

Silver Medal Prize<br />

Mrs Patricia Cornell, <strong>Rheumatology</strong> Dept,<br />

Poole Hospital NHS Foundation Trust, Poole<br />

Don’t forget to clean your teeth - does<br />

informing patients about the link between<br />

dental hygiene and Rheumatoid Arthritis<br />

encourage better dental care?


BHPR Prizes and Awards 2013<br />

BHPR/Arthritis Research UK silver medal<br />

research prize<br />

BHPR /ALGEOS clinical prize<br />

BHPR student prize


BHPR ANNUAL GENERAL MEETING<br />

1 May 2012 , 1pm


APOLOGIES<br />

Andrea Graham<br />

Michael Backhouse<br />

Vicky Cameron-Fiddes<br />

Kanta Kumar<br />

Elizabeth Ssendi<br />

Alison Blake<br />

Cathy Ball<br />

Carol McCrum


AGENDA ITEM 2<br />

AGM 2011 MINUTES<br />

• CORRECTIONS<br />

• APPROVAL<br />

• MATTERS ARISING


AGENDA ITEM 3<br />

PRESIDENT’S REPORT<br />

- Lindsey Hawley


BHPR Goals<br />

• To ensure that the key role <strong>of</strong> the MDT is<br />

understood and reflected in policy and<br />

service planning.<br />

• To provide members <strong>of</strong> the MDT with<br />

knowledge, skills and tools needed to deliver<br />

best practice and quality care.<br />

• That members <strong>of</strong> the MDT have a voice through<br />

an effective, sustainable<br />

organisation.


MEMBERSHIP<br />

700<br />

BHPR membership Trend Line<br />

Mar 2009 to date<br />

600<br />

500<br />

400<br />

300<br />

No <strong>of</strong> Mems<br />

200<br />

100<br />

0


Education Update<br />

• Plans underway to conduct BHPR courses<br />

jointly with BSR<br />

• Endorsements <strong>of</strong> external courses up and<br />

running<br />

• First training survey conducted<br />

• Education Bursaries awarded end <strong>of</strong> 2011:<br />

- Sharon Gieve (Royal National Hospital for Rheumatic Diseases)<br />

- Helen McKeenan (Belfast City Hospital)<br />

• Potential for e-learning opportunities


COMMUNICATIONS<br />

• Resources<br />

• Conference<br />

• Links to external organisations<br />

• Website: Events page, Notice Board/Your<br />

page<br />

• New communication areas: Social media<br />

channels


Special Interest Groups<br />

• Rheumatoid Arthritis (Janet Cushnaghan)<br />

• Osteoporosis (Rachel Lewis)<br />

• Connective Tissue Disease (Sue Brown)<br />

• And a new Musculoskeletal Physiotherapy group<br />

- <strong>Rheumatology</strong> Physiotherapy (Jenny Ratcliffe)


PRIZES<br />

BHPR<br />

• Chris Moran Poster Prizes<br />

BHPR/Arthritis Research UK<br />

• Arthritis Research UK Silver Medal Research Prize<br />

Victoria Manning<br />

• Arthritis Research UK Physiotherapy Silver Medal Prize<br />

Jonathan Hill<br />

• Arthritis Research UK/PRCA Podiatry Silver Medal Prize<br />

Michael Backhouse<br />

• Arthritis Research UK Occupational <strong>The</strong>rapy Silver Medal Prize<br />

Kate Hackett<br />

• Arthritis Research UK <strong>Nursing</strong> Silver Medal Prize<br />

Patricia Cornell<br />

All prize applications are online


DROITWICH LECTURE<br />

• 2013 Lecturer - Dr Philip Helliwell<br />

- nominations will open in the autumn for the 2014<br />

lecturer


AGENDA ITEM 4<br />

TREASURER’S REPORT<br />

-Trish Cornell


• Annual Report and Accounts 2011<br />

circulated with AGM papers<br />

• Appointment <strong>of</strong> independent examiners<br />

– <strong>The</strong> trustees have decided to re-appoint Paul<br />

Furrer & Co as the independent examiner <strong>of</strong><br />

accounts


Treasurers report - 2012<br />

THE FUNDS OF THE CHARITY<br />

Endowment funds: 2011 2010<br />

Droitwich Medical Trust<br />

Lecture permanent endowment fund 60,000 60,000<br />

Restricted income funds:<br />

Special Interest Groups fund - 77<br />

Droitwich Medical Trust Lecture income fund 11,300 12,504<br />

Unrestricted income funds:<br />

General fund 25,827 30,773<br />

TOTAL CHARITY FUNDS £97,127 £103,354


2013 subs<br />

Direct Debit<br />

Cheque<br />

Ordinary members £30 £35<br />

Associate Overseas members £35<br />

Associate UK<br />

and Student members £21 £26


BHPR admin support<br />

• 2006<br />

– Commenced paying for admin support .5 day per week<br />

£5,000 +VAT PA<br />

• 2007<br />

– Council agreed an increase to 1 day per week £10,000 +<br />

VAT PA<br />

• 2008 Recession<br />

– Reduced interest rate<br />

– Loss <strong>of</strong> members<br />

• 2010 BHPR 25 th anniversary<br />

– Pharma support for dinner


AGENDA ITEM 5<br />

CLOSER WORKING<br />

ARRANGEMENTS<br />

WITH BSR


<strong>The</strong> Story So Far<br />

2003 BSR & BHPR: A Plan for Closer Collaboration<br />

• Increased cross representation<br />

• Joint conference planning<br />

• Joint education courses<br />

• Joint guidelines<br />

2011-2012: Review <strong>of</strong> Original Plan<br />

• Regular meetings <strong>of</strong> CEOs and Presidents <strong>of</strong> BSR & BHPR<br />

• Initial thoughts to membership at both AGMs 2011<br />

• Working group established<br />

– Meetings with ARHP (Association <strong>of</strong> <strong>Rheumatology</strong> Health<br />

Pr<strong>of</strong>essionals) to discuss the structure within ACR<br />

– Outline proposals drafted<br />

– Discussed at BHPR Council and BSR Executive and Council<br />

– Proposals approved in principle


<strong>The</strong> Bottom Line<br />

BHPR is not financially sustainable<br />

– BHPR needs reserves <strong>of</strong> 9 months running<br />

costs (£17,400)<br />

– Reserves January 2012: £25,827<br />

– Budgeted reserves December 2012: £17,957<br />

– Estimated reserves December 2013: £10,087<br />

– Estimated reserves December 2014: £2217


AHPR/ACR model<br />

• ARHP is a division <strong>of</strong> ACR<br />

– has its own executive and standing committees<br />

– budget, staff, and tax status are all part <strong>of</strong> the ACR<br />

• ARHP sets its own policies, projects and budget<br />

– consistent with the policies and procedures <strong>of</strong> the ACR<br />

– approved by the ACR Board <strong>of</strong> Directors<br />

– the approved budget and projects are managed by ARHP (under<br />

the ACR Board <strong>of</strong> Directors supervision).<br />

• ARHP president serves as a voting representative on the<br />

ACR Board <strong>of</strong> Directors<br />

– ARHP president-elect attends as an invited guest<br />

• One or more ARHP members serve on all ACR committees.


GOVERNANCE<br />

• Constitutional changes required<br />

• All changes need to comply with legal<br />

requirements<br />

– Charity Commission<br />

– BWB charity lawyers<br />

• A formal resolution will be put to the<br />

membership (BSR and BHPR) once legal<br />

advice has been sought


Outline Proposal To Be Agreed<br />

• That work continues to establish an integrated<br />

organisation whereby BHPR retains its discrete<br />

identity as a division <strong>of</strong> BSR.<br />

• This will include the following :<br />

– BHPR retains its own council and president<br />

– BHPR president to be a voting member <strong>of</strong> BSR<br />

Executive Committee<br />

– Increased AHP representation on BSR committees<br />

– Strengthening <strong>of</strong> financial relationship<br />

– AHP category <strong>of</strong> membership within BSR


Item 6<br />

ELECTIONS RESULT AND<br />

COUNCIL UPDATE


ELECTIONS<br />

• Ms Mel Holden has been elected<br />

unopposed as Honorary Treasurer<br />

• <strong>The</strong> Trustees have agreed to co-opt<br />

Lindsey Hooper for one year to AGM<br />

2013 as Deputy Communications <strong>of</strong>ficer


Thank you and Goodbye to the following<br />

representatives to BHPR Council:<br />

Victoria Chamberlain – RCN RF<br />

Richard Rees - BSR


Thank you and<br />

goodbye to:<br />

Andrea Graham<br />

Honorary Secretary


Thank you and<br />

Goodbye to:<br />

Trish Cornell<br />

Honorary Treasurer


Welcome to:<br />

Robert Field<br />

President<br />

2012 - 2014


And Thank you<br />

to:<br />

Lindsey Hawley<br />

President<br />

2010 – 2012


COUNCIL UPDATE<br />

Trustees are:<br />

• Robert Field<br />

President<br />

• Jill Firth<br />

Honorary Secretary<br />

• Mel Holden<br />

Honorary Treasurer<br />

• Lindsay Bearne<br />

Research Officer<br />

• Sue Gurden<br />

Communications Officer<br />

• Michael Backhouse<br />

Education Officer<br />

• Lindsey Hawley<br />

Past President<br />

Links & Representatives are:<br />

• Colin Beevor & Jo White – RCN<br />

• Cathy Ball – COTSSR<br />

• Jenny Ratcliffe – CSP<br />

Co-opted members to 2013:<br />

Jo Adams<br />

Research and Education Officer<br />

Lindsey Hooper<br />

Deputy Communications Officer


ANY OTHER BUSINESS<br />

-None received<br />

AND FINALLY…


Thanks to all the staff <strong>of</strong> BSR<br />

• With special<br />

thanks to BHPR’s<br />

Chief Executive<br />

and BSR’s<br />

Director <strong>of</strong><br />

Operations and<br />

Resources, Sue<br />

Murray-Johnson<br />

who has now left<br />

the organisation.


..and to all<br />

<strong>of</strong> you!


Prize draw<br />

See you all<br />

there!


Networking session<br />

<strong>Rheumatology</strong> Physio (SIG) RA (SIG) Connective Tissue Disease (SIG) Osteoporosis (SIG)<br />

BHPR General & communication Podiatry Occupational <strong>The</strong>rapy

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