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Margins to mainstream

Raising awareness of sickle cell disease and ensuring equal access to healthcare

Blood cellsSickle cell disease affects approximately 12,500 adults and children in the UK, with 240,000 people carrying the gene trait.

It is the UK's most common inherited blood disorder, yet vast inequalities exist in the provision of healthcare services for people with sickle cell.

To address these inequalities and create access for all patients to good quality care, the Sickle Cell Society created a clinicians' working group with support from Novartis Oncology to develop the first ever clinical standards of care for adults with sickle cell.

Red Health was engaged by Novartis Oncology to highlight the standards to consumer, health and ethnic media and take the issue of sickle cell from the 'margins to the mainstream' during Sickle Cell Awareness Month in July 2008.

Objectives
• To raise awareness of key issues within the standards among consumer, healthcare and ethnic media targets during Sickle Cell Awareness Month including:
- Increased awareness of symptoms of sickle cell disease including stroke
- The need for all patients to have equal access to healthcare services
- The need for trained staff across the NHS
• Secure media coverage in excess of 10 million opportunities to see (OTS)
• Highlight the standards to 5,000 key influencers and clinicians in the UK.

Tactics
At the beginning of Sickle Cell Awareness Month, Red Health and public affairs agency Political Intelligence worked with the Sickle Cell Society to hold a parliamentary event at the House of Commons to launch the sickle cell standards. The key speaker was the Archbishop of York, Dr John Sentamu, and a supportive statement by Prime Minister Gordon Brown was read out.

Red Health worked with the Sickle Cell Society to identify the key issues behind the standards and profile case studies of patients whose own life experiences reflected them. Media briefings with key national, health and ethnic publications were set up with clinicians and case studies in advance to highlight the importance of the standards and selected media were invited to the parliamentary event. Targeted consumer and medical press releases drove further interest from journalists unable to attend the launch event.

Red Health produced a commemorative version of the Sickle Cell Society newsletter to mark the launch of the standards and it was distributed to society members, all UK PCTs and Hospital Trusts and key haematologists to drive wider awareness and uptake of the standards.

Members of the Sickle Cell Society launching 'Adult Standards' with Archbishop of York, Dr John Sentamu

The Sickle Cell Society launch 'Adult Standards' with Archbishop of York, Dr John Sentamu

 

Results 
Media coverage resulted in an OTS of 20 million:
• National newspaper coverage in Daily Mirror and The Times, with featured case studies illustrating issues tackled in the standards.
• Medical media coverage included British Medical Journal, Nursing Times and Management in Practice.
• Broadcast coverage saw a sickle cell patient journey in focus on BBC's Inside Out and a patient interview on BBC London.
• Ethnic coverage was achieved in The Voice, African Voice and New Nation.

More than 130 people attended the parliamentary reception including eight MPs, four Peers, 29 patient group representatives, 13 leading haematologists and 40 healthcare professionals.
Politicians attending were inspired to form an official All Party Parliamentary Group on Sickle Cell and Thalassaemia to bring the issues raised to the forefront from a policy perspective. An Early Day Motion was tabled in Parliament following the Reception, through which 57 MPs demonstrated their support. 

Evaluation
Elodie Miranda, Novartis Oncology said:  "Our key objective was to take sickle cell from the margins to the mainstream and this campaign did just that. For the first time, the national media were made aware of the impact of sickle cell disease and the challenges patients face. High profile speakers at the parliamentary reception enthused healthcare media and politicians alike, with coverage delivering what we felt was a great result."

Lorna Bennett, Chairperson, Sickle Cell Society says "The Sickle Cell Society has been working hard for many years to improve services for sickle cell within the NHS. This media campaign enabled us to profile our work and demonstrate the impact of sickle cell to a wider audience. We were astounded by the results."

 

Case study details

Client: Novartis Oncology
Agency: Red Health, The Red Consultancy
Campaign: Sickle Cell – Adult Standards launch
Timescale: June 2008 to July 2008

9th October 2009

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