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News

Tuesday 24th November 2015

PRESS RELEASE 

Ten New Centres of Excellence will Improve Diagnosis and Treatment for Paget’s Disease of Bone

Relatively few patients with Paget’s Disease of Bone are currently referred to specialists with expertise in the diagnosis and treatment of the condition.  Severe pain can persist unnecessarily and may lead to disability and fracture. The Paget’s Association, the only charity in the UK dedicated to Paget’s Disease of Bone, is keen to improve patient access to appropriate specialist care and address the apparent lack of understanding of this common bone condition. The charity has introduced an award to recognise hospital and university departments which demonstrate excellence in both the treatment of Paget’s disease and research into the condition.

In this, the first ever award of its kind, ten UK centres have been recognised as Centres of Excellence by the Paget’s Association. Professor Roger Francis, Chairman of the Paget’s Association explains, “Following a rigorous application and review process, the Trustees are pleased to announce that ten centres have been awarded this prestigious badge of excellence. This initiative will ensure optimal management of patients and provision of services to patients and their carers, as well as encourage much needed research.  The initiative will hopefully increase awareness of the condition in health care professionals and the general public across the UK. Patients being referred to these Centres of Excellence should be reassured that they will receive the best possible care. It is anticipated that further Centres will be identified in due course, to allow easier access to specialist care right across the UK.”

The Award Winning Centres.
The ten centres and their directors are:

  • Professor Stuart Ralston at the Western General Hospital and University of Edinburgh
  • Dr Terry Aspray at the Freeman Hospital, Newcastle upon Tyne
  • Dr Stephen Tuck at James Cook University Hospital, Middlesbrough
  • Dr Nicky Peel at the Metabolic Bone Centre, Northern General Hospital, Sheffield
  • Professor Terry O’Neill at Salford Royal NHS Foundation Trust, Salford
  • Professor Peter Selby at Manchester Royal Infirmary
  • Dr Peter Prinsloo at Nottingham City Hospital, in collaboration with Dr Rob Layfield’s research programme at the University of Nottingham.
  • Professor Bill Fraser at the Norfolk and Norwich University Hospital and the University of East Anglia
  • Dr Richard Keen at the Metabolic Bone Unit, Royal National Orthopaedic Hospital, Stanmore
  • Dr Mike Stone at the University Hospital Llandough and Cardiff Royal Infirmary

What is Paget’s Disease? The UK has the highest prevalence of Paget’s disease in the world. It is characterised by excessive breakdown and formation of bone, resulting in weakened bones that can lead to pain, severe deformity, deafness and fractures. Information and support can be obtained by contacting The Paget’s Association’s Specialist Nurse, Diana Wilkinson on 0161 799 4646 or by visiting their website www.paget.org.uk
ENDS

Professor Roger Francis is available for interview.
High Res JPEG images are available of Prof and our logo.
Please contact in the first instance: Diana Wilkinson, RGN, BSc (Hons), Specialist Paget’s Nurse, Paget’s Association: 0161 799 4646  / helpline@paget.org.uk

Diana S. Wilkinson
Specialist Paget’s Nurse
Mobile: 07713568197
The Paget's Association (Charity Reg. No: 266071)

Pagets logo

Tuesday 1st September 2015

SMART approach to improve quality of RA treatment in Scotland

A new initiative launched today (Tuesday 1st September) aims to improve the quality of RA treatment in Scotland so that patients have their disease controlled as quickly and effectively as possible.

The Scottish Metrics for the Assessment of Rheumatoid Arthritis (SMART) project will be asking rheumatology departments across the whole of Scotland to record what happens at key stages of the patient journey. This will provide a clear picture of current clinical practice and help to identify aspects of care that could be improved.

Patients in Scotland with a new diagnosis of RA have been asked to take part in the audit and a special on-line ‘audit tool’ has been developed to capture information about their diagnosis, care and treatment. This data will be analysed to find out how different rheumatology departments deliver patient services in relation to national guidance and to each other.

Led by the Sottish Society for Rheumatology (SSR), the audit has been developed by a partnership working group which includes clinicians who are members of the SSR as well as RA patient organisations, the National Rheumatoid Arthritis Society (NRAS) and Arthritis Care, and the pharmaceutical industry (Roche Products Limited).

“The SMART project is very timely and vitally important,” said Dr Elizabeth Murphy, SSR President. “While there are a host of guidelines for treatment of RA patients, NHS Scotland currently lacks measures that can be used to assess how the health service is performing with regards to treatment of RA, and whether patients are being optimally managed according to these guidelines in order to maximise the likelihood of patients achieving disease remission,” she explained.

Data from patients consenting to take part in the audit is being recorded at the start of the project and again at 6 and 12 months. This will provide a valuable overview of how patients are managed in the first year of diagnosis – a time period where good control of RA is especially important for patient outcome in the long term. All patient information will be collected, processed and stored securely and anonymised before data analysis and publication of findings so that it will not be possible to identify individual patients.

“We will also be asking patients how their RA affects their lifestyle, day-to-day activities and work – it’s essential that we focus not only on clinical information but also capture directly from patients the impact of RA on their lives. Learning from this audit will help Rheumatology teams to develop better patient service and care, and to optimise early treatment of RA,” said Dr Murphy.

The Scottish Society for Rheumatology Audit Tool development is partially funded by Scottish Government Quality Improvement and a collaborative non-promotional working agreement with Roche Products Limited. The advisory board for the audit includes members from the National Rheumatoid Arthritis Society (NRAS) and Arthritis Care.

The metrics are:

Percentage of patients achieving DAS remission  (≤2.6) at 6 and 12 months

Percentage of patients achieving an improvement in DAS of ≥1.2 at 6 and 12 months

Percentage of patients not achieving DAS remission or DAS improvement of ≥1.2 at 6 and 12 months who had treatment escalation

Time from first out-patient appointment to first DMARD

Percentage of patients who have stopped or reduced paid employment because of their RA at 6 and 12 months

For further information
Contact Dr Elizabeth Murphy (Elizabeth.Murphy@lanarkshire.scot.nhs.uk)

Find out more about


NRAS Scotland Work Survey 2010

Many units in Scotland participated in this survey as a follow up from the National Survey in 2007. The results show that a significant number of patients are unable to work as a result of their rheumatoid arthritis, and that almost half of these patients stop working within the first year of their diagnosis.


ARMA Newsletter


Briefing Note re Work Foundation Musculoskeletal Expert Summit,
2 November 2011


Ode to an Inflamed Joint

The Autumn meeting of the SSR was held in Troon on the 27th and 28th October. The conference dinner took place on the evening of the 27th in the Barcelo Hotel, Troon, and the after dinner speech was given by Dr. James Rose.

Dr Rose is a Consultant Gastroenterologist in Ayr Hospital, and entertained diners with tales of the overlap between the specialties of Gastroenterology and Rheumatology. He ended with a fine display of his poetry writing skills, and has kindly allowed us to share this with all members:

“Ode to an inflamed joint”
Dr James Rose
October 2011

Woe to you my flexible friend
That could once support and bend,
Now the seat of Celsus’ signs;
A consequence of Cytokines.
Swollen, hot, red, full of pain
You may never be the same,
For I have a great foreboding
That your cartilage’s eroding.

If I could kneel, this is my plea
To nuclear factor kappa B,
Just resist that I-kinase
In the cytosolic byways.
As for you, bold TNF,
Go on, just restrain yourself.
Do not heed that hyped up T cell
Urging you on for merry hell.

For you I’ve tried those copper bands,
The waters, crystals, magnets and
Liniments, applied kinesis,
In private, self-induced emesis,
Avoided all that’s rich and naughty
Even sprayed on WD 40.

Envoi
And, since naught else comes to mind,
I must try to rise and find
In a near botanic park,
A damn good dose of willow bark.