A lifetime of specialist care

D 0 P 0 m E Patient focus... A 0 0 e g 1 Autumn 2013 0 0 e w Welcome to our Autumn issue Children’s heart 0 g We are pleased to welcome 2 0 Mrs Chhaya Rajpal and Mr 0 0 surgery update s a Guthrie McKie h to their new roles as Trust

0 governors. We j look forward 0 to the valuable i w contributions 0 they will make n to the work of

the Trust. You 1 can read more 0 0 on page 3. a In June this year, the understand why one of the a Also in this issue is a summary of the fourth w Secretary of State for Health, best performing and largest / annual members’ meeting, held on Monday 22 Jeremy Hunt, suspended the units in the country was @ July, see page 2. 0 Safe and Sustainable review destined for closure, d of children’s heart surgery. especially when statistics We are planning a series of membership showed that the population events, which will include tours of areas of He accepted a report from in and the South both Royal Brompton and hospitals, the Independent L East was growing faster than and talks by members of staff. The first of Reconfiguration Panel (IRP), U 3 had previously been these will be on Wednesday 27 November which concluded that the l thought, and demand for with Dr Sanjay Prasad giving a talk on original recommendations 0 w children’s heart surgery cardiomyopathy. Details of this event are on h made in July 2012 by a joint /O was increasing.” page 8. h @ committee of primary care trust (JCPCT) chief executives, NHS England has now been We are always looking for new members as it 2 F which included ending tasked with developing a is important for the Trust to have an engaged 0 0 children’s heart surgery at new approach to children’s and active membership so please do spread o Royal Brompton, were based heart surgery. The team h c the word to your friends and relatives – the w on “flawed analysis of leading the new review has more members we have the better! Currently, incomplete proposals and confirmed the importance of we are recruiting patient representatives to

their health impact”. considering the whole various committees. If you think you have a 7 patient journey – from valuable contribution to make, see page 4. 0 Trust chief executive, Bob antenatal testing and B 0 Bell, commented: “This is diagnosis to adult monitoring Finally, a huge word of thanks to the fantastic 0 i very welcome news indeed. volunteers for all their help over the past year c w and interventions. w It was back in February 2011 in various roles in the Trust. Read more about that we first made the Safe This new approach is a vital them on page 5. 1 and Sustainable team aware step forward for the future 0 I hope you enjoy reading Patient Focus. K of the serious flaws in their of children’s heart surgery at 0 i methodology. It is a tragedy the Trust and we look k w that our concerns were not forward to working with acted upon then. NHS England over the coming months. “I know that patients and their families are overjoyed For more information, visit Philippa Allibone, by the news. They have www.rbht.nhs.uk/ membership manager never been able to childrens-heart-surgery 1 Trust’s successful annual members’ and Council of Governors’ meeting

The Trust’s fourth annual members’ meeting was held on Monday 22 July at the Chelsea Old Town Hall. For the first time, the meeting was combined with the annual general meeting of the Council of Governors and included presentations of the Annual Report and Accounts for 2012/2013 and the Quality Report for 2012/13. Sir Robert Finch, Trust chairman, opened the meeting and welcomed the 100 attendees, saying that the past year had been a seminal one for the Trust, during which the battle over the review of children’s congenital cardiac services under “Safe and Sustainable” had been brought to a conclusion and could now be considered a thing of the past. Bob Bell, Trust chief executive, outlined the four key strategies that are central to the way we work and our successes. They are: G A passion for doing what is right for patients G Clarity of mission and direction A question from the floor during the annual members’ meeting G Good governance and excellent management

G The provision of a service that is Mr Rosendahl explained how the built around people, drawing theatre, which will be both a from the global talent pool cardiac catheterisation laboratory and an operating theatre, would A date for your Following working group benefit patients. You can read more presentations from Sir Robert Finch, about the hybrid theatre on elected patient governor Edward page 4. 2014 diary... Waite, and staff governor Jennifer Sano, members were asked to vote Throughout the meeting, members The fifth annual asked questions, which generated on amendments to the Foundation members’ meeting will be Trust Constitution, which were some interesting discussions. held at Harefield Hospital presented by appointed governor, If you would like more details Lady Victoria Borwick. The about the meeting, the minutes on Monday 21 July 2014. amendments were passed will be available from November unanimously. 2013. Please contact the If you would like to membership office: 020 7352 8121, To close, Mr Ulrich Rosendahl, register your interest for consultant cardiac surgeon, spoke ext 2811. about the Hybrid Theatre Appeal, the event, please email: which is currently underway. Royal [email protected] or Brompton & Harefield Hospitals Charity is raising funds for the telephone the theatre, which will be large enough membership office on to accommodate large 020 7352 8121, ext 2811. multidisciplinary teams alongside highly technical equipment. 2 The Trust welcomes new governors Chhaya Rajpal, patient governor, North West London Chhaya Rajpal, patient governor, North West London “I’ve always been very interested in patients’ wellbeing and the quality of their care in hospitals. I’ve been a patient at Royal Brompton where I’ve gained an understanding of how the NHS works. But I’m keen to learn even more and to support the work of the Trust. “As a Trust governor, I will be able to represent the interests of Trust members and the public. I have been committed to community work for a long time and was on a school governing body for a number of years, which involved participating in key policy decision-making. I am also involved in neighbourhood issues, which necessitates attending council meetings and liaising with local councillors. “I have retired from my job in internal audit in the public sector where I worked closely with management in reviewing and improving organisation controls, risk and governance processes. “Being on the Trust’s Council of Governors will give me the opportunity to contribute to decision- making processes by asking questions that appropriately challenge the Council and to participate in boardroom discussions about the Trust’s performance and its aspirations.”

Guthrie McKie, patient governor, North West London

“I have been an asthma sufferer since childhood. I am also an ex-smoker and my asthma has developed into bronchiectasis. I have been going to Royal Brompton every two years for my lung function test for over 20 years now. “I really value the work done by the Trust. As a patient governor, my major areas of interest are access for patients and improving facilities. Respiratory illnesses are on the increase in London, partly because of high pollution levels, so I’m also interested in how the Trust will cope with greater demands on its services.” “I am an elected councillor in the City of Westminster where I sit on the Housing Guthrie McKie, patient governor, North West London Scrutiny Committee and have also made representations to the Mayor's strategy on air quality in London.”

3 Charity helps make Royal Brompton and Harefield world class hospitals From their very beginnings, both nursing care programme to work sponsoring a leaf on one of the Royal Brompton and Harefield with heart and lung transplant Supporter Trees. You are also very hospitals have relied on patients as they near welcome to join the Charity’s philanthropic support, the end of their lives. appeal launch parties, garden even after the parties, golf days and fun runs. founding of the NHS The Charity has For more information, please visit in 1948. Today, Royal also helped fund www.rbhcharity.org or call Brompton & the innovative 020 7351 8613. Harefield Hospitals rb&hArts “Singing Charity continues to for Breathing” help raise vital extra project, which has funds so that both demonstrably Call for patient / hospitals can provide improved the breath the very best treatments control of many public representatives and care for patients with patients at both The Trust is looking to recruit heart and lung disease. hospitals. With extra funding, rb&hArts hopes to members to act as patient or In March, the Charity launched extend the project to public representatives for the its most ambitious appeal to community-based classes so following groups: date to raise £4.5 million for a that even more people G Homecare medicines hybrid operating theatre for can benefit. Royal Brompton Hospital. The governance group – the new theatre will provide world- In addition, the Charity has group works to ensure that class facilities, combining provided almost £100k this the Trust provides a patient- complex imaging equipment year to help make your visits focused homecare service. to the hospitals more with the ability to carry out less G Patient transport committee – comfortable and enjoyable. invasive surgical procedures, so the committee monitors the There’s new furniture and patients can be treated in a quality of transport provided much shorter time, resulting in equipment, including wheelchairs, to our patients across the shorter recovery times and portable radios for inpatients to country. reduced scarring. use, a TV for the outpatients waiting room at Harefield, and G Estates and facilities user Over the last few months, the iPads as a communication aid for group – the group oversees a Charity has also been making patients in intensive care. significant inroads in raising funds wide range of non-clinical for the £200k Harefield Heart and services e.g. catering, Lung Appeal. Half of the money Get involved accommodation and domestic raised will help buy 10 ventricular You can support Royal Brompton & services. assist devices (artificial heart Harefield Hospitals Charity in a G Medication safety initiative machines), to provide a lifeline for number of ways, including making group – this multidisciplinary patients waiting for a heart a donation, joining one of the group aims to promote transplant. The remainder will be Charity's giving programmes, medication safety across the used to trial a pioneering new leaving a gift in your will, or by Trust to all staff and patients.

Maya Waldman leads a Singing for Breathing session at Royal Brompton G Website user group – a new group looking at the effectiveness of the website and how it can be improved. NB: you will need an understanding of website best practice to participate. If you are interested in contributing to any of these groups, please send a note detailing your interest and skills in the relevant area to: Melanie Foody, patient experience & patient and public involvement manager: [email protected]. Or call for more information on 020 7351 8208.

4 Growing the Trust voluntary service

The Trust voluntary service is going from strength to strength and in the last year volunteers have been assisting in ever more diverse areas, including in the information and technology department and the Harefield Hospital Library. Many volunteers support patients and families on our wards, providing them with company and helping at meal times. In the last financial year, our team of volunteers provided significant support to a record 10,614 patients across the Trust – an amazing achievement. The contribution made to the Trust by volunteers is invaluable. If you would like to offer your time to help at either Royal Brompton or Harefield, please email Mr Shaan Malhotra, voluntary service manager – [email protected]. Mr Shaan Malhotra (far left) with volunteers at Harefield

Workshop aims to involve patients as research partners

In March, over 20 participants together on research projects. If you are interested in attended our first workshop The workshop included role play attending future workshops or on involving patients as activities where researchers would like to find out more research partners. pretended to be patients. Laura about patient involvement in Henderson, research research, please contact Julia The cardiovascular and development manager at the Coffey (cardiovascular) on 020 respiratory biomedical research Trust, said: “Giving us the 7352 8121, ext 2746, or Zahra units (BRUs) organised the scenario of an invite to attend a Aden (respiratory) on ext 4960. workshop, which was run by Jack Lords committee conjured up a Nunn and Gillian Fletcher from range of emotions Macmillan Cancer Support. The amongst the researchers. charity has been successfully We suddenly realised running these workshops with a how our patient advisers number of research feel in meetings, which organisations for several years. made us much more empathetic to their role. Workshop attendee and patient, Very illuminating!” Angela Camber, said: “I thoroughly enjoyed Friday and Vanessa Garcia Larsen, learned a great deal. I found it postdoctoral researcher all extremely interesting and said: "For me as a exciting. Who would have researcher, the believed that a group of patients workshop was great and carers would be discussing because it allowed me working in partnership with to see how valuable researchers? Marvellous!” working with patients The workshop focused on and the public can be in finding the best way for designing clinical researchers and patients to work studies.”

5 We are keen to hear your patient and family experiences We are keen to hear patients’ and their families’ experiences of using our services so that we can share them with staff to understand where we do well, and to help us decide which areas need work and how we can improve. Please send either written accounts or video recordings to: Melanie Foody, patient experience & patient and public involvement manager, 3rd floor, Britten Wing, Sydney Street, London SW3 6NP or via email: [email protected]. If you have any queries, please call: 020 7351 8208.

Member get member We are always keen to recruit new members to our Trust – patients, carers, and members of the public are all welcome. And don’t be afraid to encourage your friends and family to become members too! Becoming a member is easy and free. For information and to complete a registration form go to: www.rbht.nhs.uk/members or email: [email protected]

Harefield Hospital receives “We were impressed by the level of care given by the team at Royal Brompton.” top grading for Friends “I honestly cannot think of a negative aspect of and Family Test in London this ward or the care given to me during my stay. The NHS Friends and Family Test The results from all NHS The crème de la crème of (FFT) was designed to provide an organisations are monitored on a the NHS.” insight into the experiences of quarterly basis. The results of the inpatients in acute hospitals and first quarter of 2013 were “The care and attention I A&E departments in England. It asks published in June and showed received at the most patients a single question: “How Harefield Hospital to be the top traumatic time of my life likely are you to recommend our performing London hospital. Royal cannot be matched wards to friends and family if they Brompton also made the top 10 in need similar care or treatment?” elsewhere.” the list of 49 hospitals that provide The question aims to allow patient acute inpatient care in the capital. “I have had the best views to be heard and help trusts treatment possible. It has understand how they can shape The success of our two hospitals been outstanding. The and deliver better services. means that Royal Brompton & Harefield NHS Foundation Trust is doctors, nurses and all The FFT became mandatory in April hospital staff have been 2013 and the Trust first started the third best in London and one collecting information from of the best performing trusts in wonderful. Thank you.” patients in December 2012. the country. 6 HAREFIELD HOSPITAL: • 26 March 2014 Diary dates Open workshop for all patients Time: 10.30am-1.00pm Date and time: Venue: Harefield Hospital, TRUST EVENTS 3.30pm-4.30pm every Tuesday Concert Hall Breatheasy support Venue: • 30 April 2014 Rehabilitation & therapies Time: 2.00pm-4.00pm groups seminar room, 2nd floor, These groups provide Harefield Hospital Venue: Royal Brompton Hospital, Board Room opportunities for local residents Contact: Vicki, Annabelle or Jenni and their carers living with chronic in the arts team before your first • 21 May 2014 lung conditions to join informal, session for more information, and Time: 10.30am-1.00pm to make sure the class is running friendly discussions. Presentations Venue: Harefield Hospital, as usual – or to buy the Singing are made by members of Royal Concert Hall for Breathing CD. Brompton Hospital’s chronic obstructive pulmonary disease Email: [email protected] • 23 July 2014 (COPD) team with guest speakers Tel: 020 7351 4087 Time: 2.00pm-4.00pm from both inside and outside Web: www.rbht.nhs.uk/arts Venue: Royal Brompton Hospital, the Trust. Board Room Date and time: • 24 September 2014 held on the first Tuesday of MEMBERSHIP EVENTS Time: 10.30am-1.00pm every month at 2.00pm. “Advances in Venue: Harefield Hospital, Venue: cardiomyopathy what we Concert Hall Education Centre, Respiratory are doing and where we • 22 October 2014 Clinical Research Facility, 1st floor, are going” Time: 2.00pm-4.00pm Fulham wing, Royal Brompton. – Dr Sanjay Prasad Venue: Royal Brompton Hospital, Contact: Rebecca Tanner, clinical Board Room Find out more about research physiotherapist cardiomyopathy (a disease of the • 26 November 2014 Email: [email protected] heart muscle) and hear a patient’s Time: 10.30am-1.00pm experience about living with the Tel: 020 7351 8029 Venue: Harefield Hospital, disease. You can also learn how Concert Hall the disease is treated and what research is being done to improve Singing for breathing patients’ quality of life. COUNCIL OF The sessions are aimed at those Date and time: with respiratory conditions, or 6.00 pm, Wednesday GOVERNORS’ MEETINGS breathlessness associated with 27 November 2013 • 25 February 2014 cardiac conditions, and are Venue: Respiratory biomedical Time: 11.00am-1.30pm relaxed, informative and fun. research unit, Royal Brompton Venue: Harefield Hospital, Hospital They aim to teach basic singing Concert Hall techniques, which can help with Contact: Philippa Allibone, breath-management and membership manager • 19 May 2014 release stress. Email: [email protected] Time: 11.00am-1.30pm ROYAL BROMPTON HOSPITAL: Tel: 020 7352 8121 ext 2811 Venue: Royal Brompton Hospital, Board Room Open workshop for all patients (except those attending Foulis • 21 July 2014 Ward) TRUST BOARD MEETINGS Time: 1.00pm-3.30pm Date and time: Members of the public are Venue: Harefield Hospital, 2.00pm-3.00pm every Monday welcome to attend. Concert Hall Venue: • 29 January 2014 • 23 October 2014 The Quiet Room, Victoria Ward, Time: 2.00pm-4.00pm Time: 11.00am-1.30pm 2nd floor, Fulham Wing, Royal Venue: Royal Brompton Hospital, Venue: Royal Brompton Hospital, Brompton Hospital Board Room Board Room

7 Useful contacts for Trust members Other useful contacts useful Other í í Healthwatch í í í í í í Charity Hospitals & HarefieldBrompton Royal í í TrustFoundation aeil optl ilEdRa,HrfedU96H Tel: +44 (0)1895 82 37 37 www.rbht.nhs.uk Tel:Harefield Hospital, Hill End Road, Harefield UB9 6JH +44 (0)20 7352 8121 Royal Brompton Hospital, Sydney Street, London SW3 6NP í í Address: Email: Tel: fundraiser,Community Hospital Harefield Email: Tel: assistant Executive Email: Tel: manager communications and Marketing Email: Tel: fundraiser,Community Hospital Brompton Royal Email: Tel: fundraising community of Head Email: Tel: executive Chief Contact: Contact: Email: Tel: Chairman: group support patient cardiology Harefield Website: Email: Tel: Chairman: TransplantHarefield Club Website: Email: Tel: Address: Website: Email: Tel: Email: Tel: Email: Tel: elhac Healthwatch – Kensington and Chelsea Healthwatch – Desiree Zimmerman Ann Rolfe Nick Fry James Hunt Stuart Willson Gill Raikes Corporate Secretariat Membership Office Re-Beat Harefield Hamsters 020 7352 8121 ext 2798 ext 8121 7352 020 01895 828 820 828 01895 4269 ext 8121 7352 020 4267 ext 8121 7352 020 2210 ext 8121 7352 020 8882 ext 8121 7352 020 020 8868 7571 8868 020 470 472 01494 272997 01895 6771 / 7049 8968 020 8264 7351 020 2811 ext 8121 7352 020 [email protected] [email protected] [email protected] [email protected] [email protected] [email protected] [email protected] [email protected] [email protected] [email protected] [email protected] [email protected] Unit 25, Shaftesbury Centre, Shaftesbury 25, Unit 26 Market Square, The Pavilions, UB8 1LH UB8 Uxbridge Pavilions, The Square, Market 26 healthwatchhillingdon.org.uk/ www.harefieldhamsters.org healthwatchcwl.co.uk/kensington-chelsea Lumley Anthony Allibone Philippa Ken Crisp Ken Brian Unwin Brian 85 Barlby Road, London W10 6BN W10 London Road, Barlby 85 8 Follow us on Twitter @RBandH í í í í í í í í í í intensive care unit and paediatric ward fund specific items specific fund ward paediatric and unit care intensive Website: Email: Tel: disease heart prenatal on information of source A Email: Email: Helpline: Tel: Address: disease heart congenital with patients For Website: Email: Helpline: Tel: Address: Email: Tel: Contact: Tel: Contact: Website: Email: Tel: Address: Website: Email: Helpline: Tel: Address: Website: Email: Tel: Contact: Twitter: Facebook: Web: Email: Address: Contact: LyndaMackie paediatric the help to specifically is Appeal Octavia The Twitter: Facebook: Web: Email: Tel: Address: Supportingfamilies ofchildren with heart andlung conditions Tiny Tickers The Somerville Foundation Cystic Fibrosis Trust Friends of Royal Brompton (volunteers) Friends of Harefield Hospital (volunteers) Raynaud's & Scleroderma Association Duchenne Family Support Group Primary Ciliary Dyskinesia (PCD) Group The Octavia Appeal - Friends of Royal Brompton The Brompton Fountain 020 3286 1250 3286 020 007 252 01473 7211 8464 020 8272 7351 020 678 828 01895 01270 872 776 or 0800 9172494 0800 or 776 872 01270 1857 241 0870 (helpline) 0122 111 0300 9000 7776 020 www.octaviaappeal.org www. [email protected] [email protected] [email protected] [email protected] [email protected] [email protected] [email protected] 112Crewe Road, Alsager, Cheshire ST72JA 25 St Margaret's Green, Ipswich IP4 2BN IP4 Ipswich Green, Margaret's St 25 Bromley,1BY Road, BR1 London Kent 11 78 York1DP 78 W1H London Street, 3TB SW6 London Road, Coniger 39 7JN EC2V London Lane, Love 1 www.tinytickers.org www.cftrust.org.uk Henderson Elizabeth Mortimer Debbie www.raynauds.org.uk www.dfsg.org.uk www.pcdsupport.org.uk (chairman) Copeland Fiona 0800 854 759 854 0800 1000 373 0300 0800 121 4518 121 0800 / [email protected] @OctaviaAppeal [email protected] @BromptonSupport#hereforyou /thebromptonfountain [email protected] OctaviaAppeal thebromptonfountain.org.uk (ansaphone only at weekends) at only (ansaphone

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