CF team

The specialist CF nursing team is made up of a consultant nurse (Dr Susan Madge), five clinical nurse specialists (Alan Peres, Susan Talbot, Jorge Meira, Rachel Dunk and Fiona Flynn) and a team administrator/annual review co-ordinator (Carlos Fernandes).

The team provides a service to all adult patients attending Royal Brompton Hospital – whether they are on the ward or at home. Additionally, the team is active in education and research, presenting at national and international conferences.

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Clinical services

Hospital

• Ward-based patient support, education and advice
• Long line insertion / port access and flushes
• Co-ordinating admissions – Foulis (inpatient) / Lind (day case)
• Nurse-led annual review service including physical / clinical assessment, treatment decision-making and non-medical prescribing, arranging investigations, GP letters and preparing reports
• Co-ordination of transition service, including clinics, paediatric / adult team monthly meetings, providing information and education (leaflets, DVDs, posters)
• Co-ordination of end-of-life care – talking to patients and families, weekly palliative care meetings, liaising with palliative care team / local hospices / Macmillan nurses / primary care etc.
• Sputum surveillance (all patients) – checking EPR and monthly multidisciplinary team (MDT) sputum meetings
• Lung transplant liaison (with co-ordinators at Harefield Hospital) including patient education, psychosocial assessment, arranging and following up test results etc.

Outpatients

• Attendance at all outpatient clinics providing psychosocial support, advice and education, dealing with practical issues (eg. starting home IVs)
• Running the adult sweat testing clinic
• Dealing with patient-related telephone calls and emails, including clinical assessment over the phone, non-medical prescribing and liaising with GPs
• Managing the home IV service (patient education, monitoring aminoglycoside levels – as day case / homecare / postal, follow-up post IVs)
• Co-ordination of CF-related diabetes service, outpatients, continuous glucose monitoring (CGM) service, patient education (i.e. how to inject, care of/use of insulin, how to record blood sugars etc.), psychosocial support etc.

Outreach

• Weekly telephone clinic
• Close liaison with primary healthcare teams e.g. contact (fax and phone) with GPs about changing treatment
• Weekly outreach meetings – to decide which patients should be visited at home and which should be included in the telephone clinic
• Outreach (with physiotherapists) – including workplace and college (e.g. post-admission follow-up, monitoring during home IV therapy, end of life, pre- and postnatal care, clinical assessment, education, bereavement visits)
• Co-ordinating monthly Portacath flushes – home or hospital
• Writing letters on behalf of patients – housing, DLA, travel, college

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The nursing team on Foulis ward takes a holistic, dignified and compassionate approach to the care of patients, family and significant others.

Patients are recognised as individuals and treated with respect and without prejudice. We provide a safe environment and work within the multidisciplinary team to ensure a complete package of care.

We believe in working with patients to an agreed plan of treatment, empowering patients to exercise their choice by giving them the appropriate information and education to do so.

We work in teams and aim to provide continuity of care. The teams are led by  ward sister Vivienne Green, with the support of four team leaders, senior staff nurses Jackie Evans, Lisa Nokes, Millicent Agbodeka-Manasseh and Murphy Magtoto.

We have a total of 35 nurses of which three are team support workers and one a customer care worker.

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We offer tailored nutritional advice, education and support to patients attending Royal Brompton's adult cystic fibrosis centre.

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Body weight

Weight gain

• How to meet high energy requirements through diet, nutritional supplements and tube feeding to increase weight

Weight maintenance

• Dietary modifications to maintain weight

Weight loss

• Balanced dietary advice to promote weight loss and achieve a healthy weight

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Pancreatic enzymes (PERT)

• Use of appropriate enzyme dose in relation to food intake and bowel symptoms

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Vitamins and minerals

• Role of  vitamins and minerals in cystic fibrosis
• Importance of diet, vitamins, minerals and exercise and its role in bone health
• Appropriateness of alternative therapies

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Cystic fibrosis related diabetes (CFRD)

• Dietary modifications in CFRD
• Insulin therapy
• CFRD clinic
• Optimisation of blood glucose control
• Blood glucose monitoring

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Pregnancy

• Dietary advice for women planning a family
• Dietary modification during pregnancy to achieve optimal nutritional status

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Hospital catering

The hospital operates a weekly menu cycle.  In an addition there is a special menu available to all Cystic Fibrosis patients called the ‘Call Order Menu’. This provides high energy alternative meals and snacks and can be used in addition to the hospital menu.   

Foulis ward has a patient pantry giving patients access to a microwave and kettle and there is also vending machine with snacks. Each patient room has a fridge for the storage of snacks and drinks.

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Contact us

If you would like any further dietary information, please do not hesitate to contact the team on 0207 351 8071 or 0207 352 8121 ext 4181.

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At various points during your time at Royal Brompton Hospital, you will see a physiotherapist who specialises in the care of adults with CF.

If you have any questions about any of the following topics, please speak to the physiotherapist at your next clinic appointment or annual review, or see further details below. For any urgent enquiries, please bleep 7302 or 7310 via the hospital switchboard.

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Airway clearance

Your physiotherapist will provide you with an individual airway clearance programme enabling you to clear your lungs of secretions effectively and reduce your risk of infections and potential lung damage. You may require different techniques when you are feeling well compared to when you are not, and you will likely need many changes in your physiotherapy routine through your life. We have experience in a wide range of different techniques and airway clearance equipment.

Watch our patient information films about airway clearance techniques

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Exercise

We are here to help you to maintain a good level of fitness and to improve your fitness level after an infection or operation. We will provide you with education on how your body should respond to exertion, give a variety of options for exercise you can do and support you in achieving your goals. We encourage patients to maintain sports-related skills and can give advice on incorporating oxygen devices and injury adaptation for your preferred sports.

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Musculoskeletal and postural problems

We provide advice and education for common CF-related postural concerns and we will refer you, if required, to local services that can support ongoing injuries or musculoskeletal pain. During hospital admissions we help patients return to normal functioning. We promote exercise such as sitting out of bed and provide laptop stands to improve posture while working or using the internet.

Read more about posture issues and CF.

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Stress incontinence

Leakage of urine is a common complaint in people with lung conditions. Repeated coughing causes a downward pressure on the pelvic floor muscle that sometimes causes the bladder to fail. A simple programme of pelvic floor retraining exercises tailored to either a male or female can help to alleviate or control leakage.

 

Read more about stress incontinence.

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Inhalation therapy

The physiotherapy team is responsible for providing, replacing and instructing you on how to use nebuliser devices. We provide standard air compressors e.g. PARI TurboBOY or Econoneb and eFlow rapids. You may also be suitable for an I-neb device depending on the medications you have been prescribed.

You will receive a yearly supply of parts for your air compressor or eFlow on issue. For annual replacements, queries or filters please call 020 7351 8088. For replacement parts for the I-neb, please call Respironics on 08001300857.

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Oxygen therapy

Many patients will require additional oxygen support at some time. This can be for the first few days of a hospital admission when unwell or, for others, it may be for sleeping or exercise. Everyone is different.

You may be required to complete an exercise test to determine if you need oxygen for exertion. This will be completed by the oxygen technician or a physiotherapist.

As physiotherapists we aim to help you incorporate oxygen delivery devices as easily as possible into your life. We will support you with advice and education on using oxygen for exercise, airway clearance techniques and sleep. If you already have oxygen prescribed and have a query about your prescription or device, please call Andrew (oxygen technician) on 020 7352 8121, extension 4451.

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Non-invasive ventilation

Non-invasive ventilation (NIV) is a form of breathing support that can be delivered to the lungs by a machine via the nose or mouth to ease breathlessness and improve airway clearance and sleep quality. Your CF team will advise you if they think that NIV will help you.

The physiotherapists will show you the machines and masks for delivering the breathing support and support you to get comfortable when trying it for the first time.

If you already have a ventilator machine and need new equipment or parts please contact the respiratory support department on 02073528121 extension 4704.

If you wish to discuss your settings or using your machine for airway clearance, please bleep a physiotherapist on 7302 or 7310 via hospital switchboard.

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Read more about physiotherapy at Royal Brompton Hospital

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Specialist pharmacists, respiratory medicine
Elaine Bowman, Mami Harrison and Keith Thompson

Medicines management technician
Jo Linn

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Within our department the pharmacists, pre-registration pharmacists and technicians will be involved in the care you receive as both an inpatient and outpatient.

The pharmacy respiratory team consists of the specialist pharmacists for respiratory medicine, a rotational pharmacist and a medicines management technician.

The pharmacists will visit the wards twice daily in the morning and afternoon (Monday to Friday). During these visits the pharmacist will see each patient and review their medication chart to ensure that patients are prescribed the correct, safe and appropriate medication. The pharmacist will discuss the patient’s treatment plan with them, answer any questions regarding their medicines, and counsel patients about their medicines where needed to aid concordance. Any medication related issues such as an inappropriate dose or choice, side effects, allergy, or supply problems will be discussed with the doctors and resolved, and any medicines where blood levels need to be monitored will be checked by the pharmacist. Every patient admitted to the ward will have an accurate and complete drug history taken by the pharmacist or medicines management technician, and medication brought in from home will also be checked. The pharmacy team will ensure that the patient has an adequate supply of medicines for use in hospital and on discharge.

The pharmacist is also a valuable source of medicines information, and provides advice and recommendations to all healthcare professionals with regards to prescribing, administration of medicines, side effects and interactions.

The pharmacist is an active member of the multidisciplinary team and the specialist pharmacists attend the weekly multidisciplinary cystic fibrosis ward round, and actively contribute to the patient’s care by assisting the doctors and nurses with making clinical decisions regarding the patient’s treatment.

Living with cystic fibrosis (CF) can be difficult and at times people may find it hard to cope with their health, illness or demands of treatment. 

When people are finding it difficult to cope with their health or other life stressors, they often feel less motivated to engage in their treatments, which can affect their physical and emotional health. At these times, it can be helpful to meet with a clinical psychologist.

The role of a clinical psychologist is to help people to understand and better cope with a range of emotional difficulties that can affect day-to-day life. Psychology can therefore play an important role in managing difficult emotions, coping with CF and improving overall quality of life. 

The psychology service is available to all patients of the adult CF service, both as outpatients and inpatients. 

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What sort of issues can a clinical psychologist help with?

• Feeling low in mood, worried or depressed 
• Difficulties coping with your health and treatment
• Anxiety and worry, including worry about hospital admissions or invasive procedures
• Difficulties with sleep 
• Coping with transition to the adult CF service
• Self-esteem or body image issues
• Keeping control and independence over daily activities
• Coping with uncertainty about future health and treatment
• Adjusting to changes to everyday life caused by illness 
• Family and relationships problems 
• Difficult decisions in relation to your health, such as having a transplant

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Accessing the psychology service

If you would like to meet with a clinical psychologist, you can discuss this with the CF team at a clinic or annual review appointment. They will be able to refer on your behalf. If you are an inpatient, you can ask a member of the CF team on the ward to make a referral to the psychologist who can meet with you during your admission. 

At times, someone from your medical or therapy team will suggest that you meet with the psychologist and discuss this with you at clinic or during an admission. Some people are often unsure about talking to a psychologist and whether this will be helpful; it is often a good idea to attend an initial appointment to see if this is something that would work for you.

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Meeting with a psychologist 

When you are referred to the psychology service, you will be offered an initial appointment. This will allow you to discuss the reasons why it may be helpful to speak to a psychologist and describe any worries and concerns that you may have. You can choose whether you would like to attend alone or invite a member of your family or a friend. 

Following this session, the psychologist will agree a plan with you. Sometimes it is agreed that psychology support is not necessary at the time but that this can again be accessed in the future if helpful. It may be that a plan is made; this could be to return for a review session, to arrange a number of sessions for work on a specific issue or to refer you to your local community psychology services for further support closer to your home.

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Confidentiality

Information discussed in psychology sessions is confidential, although information is shared with other members of the team if relevant to your treatment or safety. If you are seen as an inpatient, some information will be written in your medical notes to update your team. Detailed discussions do not need to be included. If you are seen as an outpatient, we may write to your team in the hospital here and/or your GP in order to help co-ordinate your whole team of health professionals. Your psychologist will discuss this with you further so you feel safe and confident about this. 

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If you would like to speak to someone to find out more information about the psychology service and making an appointment, you can discuss this with the cystic fibrosis team at your next clinic or annual review appointment.  

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What is supportive and palliative care?

The purpose of supportive and palliative care is to improve the quality of life for patients and their families facing problems associated with an advanced or life-limiting illness such as cystic fibrosis (CF). 

The supportive and palliative care team can assist you in making choices about your health and future care. We will assess your needs and work with the specialist CF team to improve your symptoms and quality of life. The team works closely with all the health professionals involved in your care. If required, we can arrange referrals to other professionals within the Trust or in the community, such as community palliative care teams. 

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What sort of issues can the supportive and palliative care team help with?

• Offer specialist advice and expertise in managing symptoms such as breathlessness and cough, pain, nausea and vomiting, constipation, fatigue and anxiety. These symptoms may occur due to some of the treatments you are having to manage issues related to your CF, eg. antibiotics
• Assessment pre- and post-organ transplantation
• Support for your family, friends and / or carers
• Help you plan ahead to ensure that your wishes are known and communicated with other professionals involved in your care
• Offer specialist advice and support in all areas relating to end-of-life care

Read more about supportive and palliative care

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Accessing the supportive and palliative care team

You will be referred to the supportive and palliative care team by your lead consultant. Referrals can also be received from patients or relatives but will be discussed with your lead consultant prior to assessment. A member of your health team might suggest that it would be beneficial for you to meet a member of the supportive and palliative care team, especially if you have troublesome symptoms. This will also be discussed with your lead consultant before assessment.

 

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Inpatient services

When you are referred, a member of the team, either a clinical nurse specialist or consultant, will visit you on the ward during your admission. How often you are reviewed by the team will depend on your clinical needs. We work closely with and alongside the specialist CF team so will be in constant communication with them about your care. There are weekly CF multidisciplinary meetings, which are attended by different members of the CF team, where specialist expertise is shared. 

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Outpatient services

If you are visiting the hospital for an outpatient appointment and feel you would benefit from the services we can offer, or would like to know more, please ask a member of the CF team to contact us.  If you have been reviewed by the supportive and palliative care team during your admission, a member of the team may see you at your next outpatient appointment to follow up any needs.

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Contact

Royal Brompton Hospital 

Monday to Friday, 9am–5pm

020 7352 8121 ext 4136

Harefield Hospital 

Monday to Friday, 8:30am–4:30pm

01895 828 922 (direct line)

You can leave a message and we will return your call as soon as possible. This might be the next working day. 

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Anastasia Christofylaki

Anastasia is the friendly face who greets patients, their family and friends when they arrive on Foulis ward.

She is charged with admitting and discharging patients, ensuring they reach their appointments on time and booking follow-up appointments before they leave.

"It's important to me that Foulis feels like a comfortable and friendly place to be, for everyone - patients, relatives and staff alike. It's my biggest priority."

Kevin Passey
Kevin, a CF patient himself, is our patient advocate and has been in the role since 2004. He acts as advisor to, and representative of, other patients under the care of Royal Brompton Hospital's CF centre, giving them a voice in the planning and delivery of the clinical service. The role has evolved over time, especially with the introduction of cross-infection policies.

"The most important thing for CF patients to know about me is that I'm a patient too, and I'm working to support them; I'm not directly associated with the hospital."

Kevin represents the views and concerns of patients with CF and patients with children with CF to the many professionals they come into contact with. On the flipside, he also represents the CF centre, contributing to discussion about the quality of service provided, and influencing its responsiveness to patient needs and concerns.
 
"The time I spend helping people through my role varies from month to month, but people can contact me anytime they need some advice or guidance, to flag up an issue at the hospital, or even if they'd just like a sounding board to share their experience."

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Contact Kevin on:
Tel: 0845 519 7832
Email: kevin@rbh-cf-advocate.org.uk

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