Consultant Nurse Rheumatologist Sue Brown, Role of the specialist nurse.

1. Role of the specialist nurse
Sue Brown
Consultant Nurse in Rheumatology
(Connective Tissue Diseases)
RNHRD NHS Foundation Trust, Bath
19th July 2014

2. Today's presentation
• Introduce the role of the nurse specialist
• National guidelines
• Local practice in specialist centres such as the RNHRD
• What is a specialist nurse?
• Consider the special needs of people with Raynaud's and
scleroderma
• Help you to self manage your symptoms
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3. EULAR guidelines on the role of the nurse in inflammatory arthritis 2011
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Access to a nurse for education A nurse who promotes self-management
skills
Access to nurse consultations to
improve communication
A nurse that provides care based in
national and local protocols and
guidelines
Access to nurse-led telephone support A nurse with access to continuous
education
A nurse who participates in
comprehensive disease management
A nurse who undertakes extended roles
according to national guidelines
A nurse to address psychosocial issues
helping to reduce anxiety and
depression
A nurse who monitors and intervenes as
part of comprehensive disease
management to achieve cost savings
Van Ejik-Hustings Y, Van Tubergen A, Bostrom C et al (2011)

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RCN Pandora Project
Leary & Oliver, 2010
• Releasing time to care – 6.25 hours per specialist nursing week spent on clerical work that
would be better performed by admin staff
• Metrics – vigilance and rescue, psychological care and physical review – added value of
specialist nurse
• Activity and cost – significant benefit to organisation, including patient outcome and cost
benefit – OPD work equivalent to £72,128 pa per nurse WTE, freeing up consultant
appointments
• Telephone consultations save £72,588 pa per nurse WTE by reducing GP appointments
• Prescribing – management of symptoms, side effects and drug toxicity
• Education – expertise in management of patients at a high level of education and competency
• Succession planning – 22% of specialist nurses at MSc level, 26% non-medical prescribers –
mean number of years since qualification 24

5. What is a specialist nurse?
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Royal College of Nursing 2010

6. Specialist Nurses at risk?
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• This document suggests that specialists nurses are a valuable resource
at risk
• Specialist nurses were one of the groups hardest hits by NHS deficit
crisis of 2005/6
• Poll of specialist nurses published by the RCN in 2008 showed:
• 1:4 faced risk of redundancy
• Half were aware of cuts in service in their speciality
• 45% were being asked to work outside their speciality to cover staff
shortages in general clinical settings

7. So what do specialist nurses give you as a patient?
• Add value to patient care
• Generate efficiencies in organisations through new and innovative ways
of working
• Cost effectiveness includes:
• Reducing waiting times
• Avoidance of unnecessary hospital admission/re-admission
• Reduced post operative hospital stay times
• Freeing up of consultant appointment for other patients
• Services delivered in community at point of need
• Reduced patient treatment drop out rates
• Education of HPs and social care professionals
• Introduction of innovative service delivery frameworks
• Direct specialist advice given to patient and their families
Specialist nurses, changing lives, saving money RCN 2010
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8. Specialist Nursing Practice at RNHRD, Bath
• Sue Brown, consultant nurse in rheumatology
• Lead nurse in rheumatology with line management responsibility for all
specialist nurses and clinical research nurse manager/research nurses
• Specialising in CTDs with special interest in digital ulcers in scleroderma and
managing pregnancy with scleroderma
• 19 years experience in rheumatology
• Appointed consultant nurse in 2012
• Previously specialist nurse in rheumatology since 1999
• Completed MSc in healthcare practice 2003
• Non medical prescriber completed 2012
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9. Specialist nursing practice
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Education
Diagnosis
Medication
Controlling disease
Information
Symptom management
Types of disease
Red flags
Support
Living with long term health
conditions
Access to support groups
Advice
Principles of self help –
pacing/planning
Early contact with team when in
flare

10. My clinic consultations
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• Assessment of patients nursing needs in clinic
• Diagnosis, treatment and management plans
• Review of current health status and reaction to any red flags
• Social and psychological support – referral to other team members as
needed
• Close liaison with CTD medical team Prof McHugh/Dr Ellie
Korendowych/Dr John Pauling – alternate clinic appointment between
medical and consultant nurse clinic
• Management and co-ordination of IV Cyclophosphamide, Rituximab and
Iloprost service
• Information, potential side effects, management plan, consent,
interpretation of all appropriate investigations
• Management and supervision of patient telephone advice line service
• Helping you to help yourself

11. The types of things we discuss
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• Managing Raynaud's
• Care of the skin and prevention of digital ulcers
• Skin score
• Dry eyes, dry mouth, dry vagina
• GI problems in scleroderma
• Breathing and cardiac function
• Yearly pulmonary function and echo
• Early referral for investigations if needed
• General observations
• Bloods (FBC, renal and liver function), urine dip, blood pressure

12. The role of the lupus nurse specialist
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I am here to help you to put things into perspective

13. What happens in a Raynaud's attack?
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• Raynaud’s leads to:
• Episodes of blood vessel spasm
• Reduced blood flow and oxygen levels to the peripheries
• Reduced ability for the skin to heal itself
• More frequent attacks can lead to development of digital ulcers,
especially in those with Scleroderma

14. Controlling Raynaud's attacks
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• Sensible advice – keep warm, use hand warmers, gloves
• Maintain a stable temperature wherever possible
• Minimise stress (if possible)
• Medications can help - vasodilators
• can sometimes be limited by side effects
• some can make it worse – beta blockers!
• High dose evening primrose oil/fish oils can help in some
• Gingko Biloba can help in some

15. Modified Rodnan skin score
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Site Score
Face 3
Anterior
Chest
3
Abdomen 3
9
Right Left
Upper
arm
3 3
Forearm 3 3
Hand 3 3
Fingers 3 3
Thigh 3 3
Leg 3 3
Foot 3 3
21 21
Maximum 51
Assessing 17 sites (maximum score 51)
Scoring of each skin region determined
by skin thickness and tethering:
0 = normal
1 = possible thickening
2 = definite thickening but mobile
3 = skin more thickened and fixed to
deeper tissue ‘hide-bound’
• Sclerosis of the skin a major hallmark of the
disease
• 17 sites of the body
• ‘Pinch’ score (tethering, rather than thickening
more reproducible)
• Skin component in Scleroderma Severity
Scale Medsger et al 1999 Journal of Rheumatol 26: 10; 2159-2167

16. Preventing digital ulcers
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• An ulcer is a break in the skin that takes a long time to heal
• Leave any areas of hyperkeratosis alone
• Apply cream to soften the area only
• If the wound does become infected
• Yellowy coloured discharge
• Redness, swelling, pain
• Failing to heal
• Contact your local rheumatology team/GP
• Start tablet antibiotics and dress wound with Inadine/Meplilex
• If the ulcer worsens then admit for IV iloprost and antibiotics
• Keep a digital ulcer diary to map (see your nurse) and document the
location of the ulcers
• Monitor response to treatment

17. Dryness
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• Commonly called ‘sicca’ symptoms
• Most complications result from decreased tears and saliva production
• Dry eyes can lead to infections and possible damage to the cornea
• Dry mouth can cause increase in:
• Dental decay
• Gingivitis (gum inflammation)
• Oral thrush
• Pain and burning
• Painful swelling in facial salivary glands

18. Managing dry eyes
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Dry eyes
• Avoid dry atmospheres
• Humidify rooms
• Wear glasses with side arms
• Tear replacements
• Hypromellose (preservative free)
• Viscotears or Lacrilube
• If sticky – Acetylcysteine
• Antibiotic eye drops if infected

19. Managing dry mouth
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Dry mouth
• Sips of water (rather than glugs)
• Avoid sugared drinks
• Chew sugarless chewing gum
• Saliva replacements
• Gels, gums, sprays
• www.biotene.co.uk
• SSTs (saliva stimulation tablets)
• Salivix pastilles
• Spoonful sugar free Greek yoghurt before bed
• Review medication list
• Some can worsen dry mouth symptoms

20. GI problems in Scleroderma
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Difficulty, painful swallowing
Eat slowly, chew well and drink lots of water
Avoid foods that will ‘stick’ – white bread, steak, chips
Consider drugs to improve movement in the bowel
Surgical treatment only if severe
Reflux
Weakening of the sphincter muscles
Acid flows back into the oesophagus
Persistent reflux damages lining and may lead to:
• Heartburn, regurgitation, dysphagia
• Ulceration, bleeding
• Stricture
• Barrett’s oesophagus (caused by chronic reflux)
• Persistent cough, non cardiac chest pain, hiccups
Effective treatment of reflux is important and may need high dose PPIs

21. GI problems in Scleroderma
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• Avoid eating 2-3 hours before bedtime
• Avoid drinking 11/2 hours before bedtime
• Stop smoking (also for advice for Raynaud’s)
• Elevate head of bed 4-6” and sleep propped up
• Lose weight
• Avoid reflux producing foods – fat, chocolate, caffeine, alcohol
• Avoid or minimise acidic foods such as citrus juice
• Decrease meal volume, increase frequency of meals

22. GI problems in Scleroderma
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• Scleroderma can cause the bowel to be ‘sluggish’
• Follow a well balanced diet
• Report and abdominal swelling, pain, diarrhoea or constipation
• We can refer to gastroenterologists if needed
• Some benefit from rotating courses of antibiotics
• Probiotics (drinks, tablets) can help in some
• Maintain a good fluid intake
• Avoid foods that worsen symptoms – spicy, fatty, rich, dry foods

23. Monitoring cardiac and lung function
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• Regular monitoring with pulmonary function test and echo are
essential
• Early diagnosis of complications – pulmonary fibrosis, pulmonary
hypertension
• Reports any changes in symptoms
• Breathlessness
• On the flat
• On exertion or inclines
• Cough
• Consider chest infection
• Stop smoking
• Chest pain
• Palpitations

24. Fatigue
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• Just think about whether you have ‘good’ days and ‘bad’ days
• Do you tend to overdo things on a good day that then results in a
bad day?
• Increasing symptoms of fatigue and pain
• This is called the ‘boom and bust’ approach to activity
management
• If you continue with this on a regular basis
• over time you become less able to achieve the same
amount of activity on a good day
• You can use goal setting that allows you to achieve something of
importance to you, even on a bad day
• Using the SMART principles
• Specific, measurable, achievable, realistic, time restricted

25. Managing fatigue
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• There is a key to living with fatigue
• Try to understand you body
• Look for times and situations where your fatigue becomes
worse
• Try to recognize if your condition is more active and seek
medical advice is needed
• Consider your plans
• Look at your sleep pattern
• Ask for help when you need it

26. I believe in promoting positive health in scleroderma
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• Role of nurse specialist is one of adviser, supporter, educator and counsellor
• Tailoring the support and information/education according to individual need
• Providing opportunities to share worries and concerns
• Enabling patients to make informed choices
• Building up a good relationship so patients do not feel a nuisance
•‘I know the doctors are really busy, but I feel I can
contact you if I need to…’