Tuesday 29 October 2013

Engaging MPs in Cystic Fibrosis

The Cystic Fibrosis Trust has recently begun a project of getting Members of Parliament to visit their local cystic fibrosis units. To give an insight into how such visits support the Trust's work, Public Affairs Officer Lynsey Beswick has written about the first two visits:

This month as part of my role as  Public Affairs Officer for England, I invited Luciana Berger MP; Shadow Health Minister for Public Health and Rachel Reeves MP Shadow Secretary of State for Work and Pensions to visit cystic fibrosis units in the North.

Last Friday, the Cystic Fibrosis Trust team and I met with Ms Berger, who is MP for Liverpool Wavertree, at Alder Hey Hospital in Liverpool to discuss cystic fibrosis care with the clinicians there.

The staff there spoke of their excellent network of care structure in Liverpool which spans across 12 smaller hospital clinics locally. They discussed the importance of sustaining this model of care within the region.

We were also invited to enjoy the spectacular view of the new hospital building site, which is being built adjacent to the current hospital. The new hospital promises improved facilities including ensuite rooms on all the wards, which will be important to help to segregate children with cystic fibrosis for cross-infection purposes.

As a result of the visit, Ms Berger will champion the work of the local service in Westminster by highlighting concerns raised by the service around the payment by results tariff and psychology provision.

In West Yorkshire, Rachel Reeves who is MP for Leeds West visited the adult cystic fibrosis unit at St James's University Hospital in Leeds the previous Friday. Ms Reeves met with the multidisciplinary team there and the Cystic Fibrosis Trust team.

The key focus was around capacity issues in adult cystic fibrosis care., relating to the rise in the number of adults with cystic fibrosis, due to better life expectancy and treatments. This means that as the population grows, there is an urgent need for the development of new adult cystic fibrosis care services.

The staff  gave a presentation on cystic fibrosis care with an emphasis on the importance of home intravenous antibiotic care at the unit.

We were also keen to discuss the new Personal Independence Payment (PIP) welfare system, which is being rolled out later across the country in stages this year and will affect thousands of people with cystic fibrosis

As a result of the meeting we were delighted that Ms Reeves would like ongoing information on how the new PIP welfare system is affecting people with cystic fibrosis so that she can represent her constituent's interests in Westminster as the rollout takes shape.

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