Patient Focus Spring 2014.qxd:Layout 1 07/05/2014 14:27 Page 2 A lifetime of specialist care D 0 P 0 m E 0 e A 0 PatientThe newsletter for patients and ourFocus foundation trust members | Issue 3 – Spring 2014 g 1 0 0 e Royal Brompton Hospital 0 2 s 0 Welcome to 0 – our plans for the future a h 0 Royal Brompton & Harefield NHS Investment in Harefield Hospital is the latest issue j Foundation Trust is the UK’s leading ongoing and there are no plans to centre for heart and lung disease; sell or move from this well- It is an exciting time for the Trust as plans progress to rebuild Royal Brompton Hospital, 0 two of the world’s biggest killers. established site. consolidating services on one state-of-the-art i Investing in new and existing 0 Exhibition of plans facility in Sydney Street. It is vital that we raise n facilities at Royal Brompton Hospital the appropriate funding to enable this is essential. It is increasingly difficult A four-day public exhibition was ambitious project to go ahead. More details to deliver the care patients deserve held in February to share the opposite. 0 1 from some of our ageing buildings. evolving plans for Royal Brompton. a 0 We need 21st century state-of-the Over 330 people attended the We began a series of member events in 2013; a art facilities to continue to save lives exhibition and the majority the first in October and the second in November – read about them on page 2. More events are w and provide world-class care for expressed support for the planned for this year and will be advertised in 0 patients. Having assessed the redevelopment plans. A further d @ possible options, including exhibition will be held in June and Patient Focus and the members’ section of the Trust’s website. relocating, the Trust Board has taken we encourage you to come along the decision to continue developing and find out more about our exciting We are pleased to welcome five new governors on the current Sydney Street site in and ambitious plans for the future. to the Trust and we look forward to the valuable U L Chelsea. contributions they will make to our work. You 3 Want to know more? can read more about them on pages 4 and 5. The costs will be substantial – in the 0 l region of £580 million – but the You can visit our redevelopment If you are interested in contributing to our h w website – http://royalbrompton long-term benefits will be exciting research work in heart and/or lung h consultation.rbht.nhs.uk/ – to see @ enormous. To achieve this, we need heath, see pages 8-9 for more to sell property in the local area the plans, read the feedback from information. 2 owned by the Trust and its Charity the first exhibition and stay up to 0 F Finally, I hope you enjoy for the highest possible return, date with all the issues and progress. o 0 reading Patient Focus. h c which will allow us to invest the If you have any questions, please get money into providing a truly modern in touch with our community hospital. This means we need to gain consultation team. permission from the Royal Borough of Kensington & Chelsea to sell Freephone: 0800 881 5442 0 B some property for residential use. Email: [email protected] 0 i Put simply, if we cannot raise Philippa Allibone, c enough money, we cannot improve Freepost RTBH-CATL-ZXGT membership w our facilities to the level needed and Director of Capital Projects and manager we will be forced to continue Development 1 0 applying costly temporary fixes and Royal Brompton Hospital K remedial works so that our patients Sydney Street 0 k can get the care they need. London SW3 6NP Outpatients’ service evaluation for Have your say on our strategic plans Diary dates patients with a disability Pages 6-7 Page 11 Page 3 Patient Focus Spring 2014.qxd:Layout 1 07/05/2014 14:27 Page 3 page 2 – Patient Focus Spring 2014 Cardiac catheter laboratories tour – Harefield Hospital The Trust’s inaugural members’ event was held on Wednesday 16 October – a “behind the scenes” look at the cardiac catheterisation laboratories at Harefield Hospital. Mark Bowers, catheter lab manager, led the tour, giving a brief history of Harefield and explaining the primary angioplasty 5Chris Prytherch, radiographer, with visitors to Harefield Hospital programme, which has one of the fastest arrival-to-treatment times in the UK – a critical element in patients’ survival. Members were impressed by the enthusiasm and knowledge of Primary angioplasty is an emergency treatment for heart the staff involved and gave us some excellent feedback: attack. “Excellent explanations, well illustrated by seeing the actual Members took the opportunity to find out more about cardiac equipment (X-rays) and products used (stents).” electrophysiology, the X-ray equipment and the different types “Very informative and very reassuring. Particularly if an of procedures performed in the cath labs. They were shown individual has to have one of the procedures discussed.” pictures of angiograms and a cardiac stent being inserted into a coronary artery and were able to closely examine the cardiac “Delightful staff who took interest in explaining. A ‘big thank you’ catheters and stents. to everybody in the labs”. “Advances in cardiomyopathy” – Royal Brompton On Wednesday 27 November, over 30 Royal Brompton & Harefield NHS cardiomyopathy, to the podium to talk Trust members attended a talk entitled Foundation Trust is active in research in about living with the condition, the “Advances in cardiomyopathy – what we cardiomyopathy, which Dr Prasad agrees symptoms of which he had first are doing and where we are going” by Dr is the way forward in discovering the experienced as a child when he became Sanjay Prasad, consultant cardiologist at best treatments. For example, breathless after the smallest exertion. Royal Brompton Hospital. cardiovascular magnetic resonance (CMR) He has been a patient at Royal Brompton has already proved a better tool for Cardiomyopathy is a disease of the heart for 10 years, and said the care and diagnosing heart failure caused by muscle and a leading cause of heart treatment he has received have greatly dilated cardiomyopathy (DCM) than a failure. Dr Prasad explained the different contributed to the good quality of his standard angiogram. Dr Prasad showed types of cardiomyopathy: hypertrophic, life now. images of several cases of dilated and arrhythmogenic right cardiomyopathy, explaining their Several members asked pertinent ventricular. He also spoke about chronic background and the differences between questions about the MRI images and heart failure treatments, prognosis, each. were also keen to know how to improve morbidity and prevention. the quality of life of patients with Genetic research is also important and a One of the most important approaches cardiomyopathy. recent breakthrough has identified a for the successful treatment of mutation in the Titin gene, which is One member commented: cardiomyopathy is early diagnosis and, as found in one in four patients diagnosed the disease is often inherited, Dr Prasad “The talk was interesting, simple to with DCM. and colleagues have started a understand and informative. The time cardiomyopathy clinic, where an entire Towards the end of his talk, Dr Prasad flew by. I could have stayed listening family can be screened for the condition. invited Mr Peter Klinger, a patient with all night.” Patient Focus Spring 2014.qxd:Layout 1 07/05/2014 14:27 Page 4 Patient Focus Spring 2014 – page 3 Outpatients’ service evaluation for patients with a disability We evaluated outpatients’ services at made the following changes to improve ¼ Provided more water coolers for patient Royal Brompton Hospital between the experience for patients: use. February and April 2013 to gain ¼ Trained outpatient staff and those ¼ Refurbished some treatment rooms. information on how we can improve the working in adult congenital heart experience of patients with a physical ¼ Employed a new ECHO technician for disease and the pulmonary patients with adult congenital heart and learning disability. hypertension teams in communication disease. The evaluation involved six patients with and Makaton (a type of sign language) physical and learning disabilities, and skills. ¼ Updated information about disabled parking on the Trust website. their carers, who were shadowed during ¼ Added a sign outside Chelsea Wing their outpatient visits and interviewed advising wheelchair patients to use the We have undertaken a similar service afterwards. Shadowing patients was Sydney St entrance. Information has evaluation in outpatients at Harefield found to be extremely insightful, also been included in outpatient letters Hospital. Results will be available soon. particularly with patients who often for patients having an echocardiogram If you would like to know more about the experience difficulty in communicating. (ECHO). evaluation, please contact: Melanie Foody, Staff, including consultants, nurse ¼ Re-arranged seating in outpatients for patient experience and patient & specialists and clinical support assistants easier access for wheelchairs and involvement engagement manager, on were also interviewed. created a designated area for email: [email protected] or As a result of the evaluation, we have wheelchair users. telephone: 020 7351 8208. Adult congenital heart disease meeting for patients and their families The adult congenital heart disease (ACHD) team held its fourth annual patient and family conference day at Royal Brompton in March. ACHD consultants, clinical nurse specialists and members of the arrhythmia and psychology teams shared their expertise with over 40 patients and relatives. Attendees took part in focus groups and discussions to share their experiences 5Suzanne Rowsell talks to a patient at the conference with each other.