Posted: January 25 2019
Stephen McPartland MP at the last Support Group meeting in October 2018
A support group for anyone affected by the little known but devastating lung disease Pulmonary Fibrosis demonstrates how integrated working can improve patient care.
Primary and Secondary Healthcare Trusts in Hertfordshire have come together with the charity, Action for Pulmonary Fibrosis to promote supportive care for patients with Pulmonary Fibrosis.
The support group is for anyone affected by Pulmonary Fibrosis in the Hertfordshire area. This includes patients, their families, carers and friends. In other parts of the country, support groups have proved invaluable in helping patients and carers to meet each other, develop mutually supportive relationships and be informed on treatment options.
Working in partnership to develop a support group for patients with Pulmonary Fibrosis has strengthened the connection between two healthcare trusts enabling a seamless transition of patient care and improving communication. The group has recently engaged with patients to develop a new patient information pack, to be delivered at the point of diagnosis, improving the patient journey between the two trusts.
The Hertfordshire Support Group was set up by Physiotherapist Laura Bygrave from Hertfordshire Community NHS Trust in 2017 with support from Respiratory Consultant Dr Chong and Respiratory Nurse Jane Conway who both work for East and North Hertfordshire NHS Trust. Action for Pulmonary Fibrosis has supported both trusts in the setting up process.
Stephen McPartland MP, pictured above with the Hertfordshire Support Group, said: "It was great to be invited to speak at the group and see how far it has come. I look forward to continuing to work with the members and deliver positive changes for those with advanced respiratory diseases locally."
Jane Conway, Respiratory Nurse Specialist from East and North Hertfordshire NHS Trust, said: “Our interstitial lung disease (ILD) service has continued to grow and improve this year, and patients now have better access to diagnostic tests, research trials and support. The service has a dedicated multi-disciplinary team that ensure patients are diagnosed quickly and receive the right treatment. Early referrals between primary, secondary and tertiary care have played an integral part in improving patient experience and outcomes.”
Colin Hambling, a patient who has been attending the group for two years said: “I suffer from Idiopathic Pulmonary Fibrosis (IPF), which falls into the category of Interstitial Lung Disease (ILD). Because ILD, and particularly IPF is relatively unknown within the community, it can be difficult having to explain to people what this disease is about.The support group is extremely helpful to me on two counts. Firstly, it is good to share experiences with fellow sufferers without the need to go through all the explanations. Secondly, the guest speakers at the meetings are interesting and informative.The Support Group and Action for Pulmonary Fibrosis offers invaluable support to those suffering from this little known disease and gradually the public profile is being raised.”
Gillian Murphy, a family member who attends the group said: “The support group has been an excellent way to help give people with IPF a voice, to raise the concerns and learn bout the condition from experts to manage their symptoms. It gives an opportunity to raise the profile of this disease and help to ensure that local medical services are effective in recognizing the symptoms and referring for appropriate specialist care early. Being able to have the opportunity to share and gain support of other people is invaluable as only someone who has this disease can truly know how it feels.”
To attend the Support Group at Shephall Community Centre in Stevenage on 21 February or 11 April, or to find out more please contact: 01462 478783
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