Pharmacy update: we have switched Homecare high cost drug provision from Lloyds  to Sciensus. This will involve a transition period over the next few months where you may still have outstanding deliveries from Lloyds whilst all patients  prescriptions move across. Apologies for any inconvenience during this transition.

If you have not had a delivery from Sciensus yet, you will unfortunately not know which company holds your current prescription. So for the next few months when arranging a delivery we ask that you contact  Lloyds first (Tel 0345 2636 123) followed by  Sciensus if Lloyds unable to help (Tel 0333 103 9499). If you experience any problems  please then contact your clinical team. Once you receive a delivery from Sciensus you will not need to contact Lloyds again.

We have experienced delays due to staffing shortages at both Homecare companies, so please plan your next delivery when you still have  3-4 weeks of medication left to avoid being left short.

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How The Exeter Service Runs – Adults


Outpatients

The Adult Cystic Fibrosis team works with young people and adults with a diagnosis of Cystic Fibrosis and we welcome you to our service. If you are transitioning to us from local children’s services we will introduce ourselves to you and your family over the 12 months leading up to that point. This is usually when you start to attend adolescent clinics as part of your planned transition process. This leads in to a planned formal transfer of your care to us in adult CF care leading up to your 18thbirthday.

A small number of adults are diagnosed later in life and referred into our services sometimes through our fertility service.

We also welcome those moving into the area from elsewhere and are here for you throughout your time here in the Exeter region.

In response to the COVID pandemic we have learnt from the experience and adapted the way we run our CF clinics. We now offer both Face to Face and Virtual appointments depending on clinical need. Virtual appointments ( held by ‘Attend anywhere’ video link) have been welcomed by many of you allowing flexibility and avoiding the need to attend hospital so regularly.  We will try and accommodate personal preference where possible  and will adapt to any updates in Covid prevalence.

Your clinic appointments will be a mixture of Consultant lead and Nurse directed reviews. All individuals seen in clinic are discussed with the CF MDT at our weekly meeting to ensure high quality care.

The current clinic timings ( as of May 2022) are:

  • Consultant directed MDT clinics occur every Tuesday afternoon. These are virtual or face to face. You will be seen by the CF Consultant and have access to the MDT.
  • Joint CF Diabetes clinics occur monthly with the Diabetes Consultant (Dr Amanda Stride). She will be present in addition to the CF Consultant and MDT.
  • Joint CF Liver clinics occur quarterly – during these you will be seen by the specialist Liver Consultant jointly with a CF Consultant and MDT.
  • Nurse directed clinics occur every Wednesday morning and are currently predominantly virtual. You will be seen by an experienced Clinical Nurse Specialist alongside a CF Physio and CF DieticianPre- Annual review clinics. We will see you ahead of your Annual review to complete tests required for your Annual review (eg: blood tests, CPET, chest x-ray etc). Where possible this will be one of your scheduled follow up appointment and not an additional visit. Your Annual Review will then be completed at the next scheduled clinic and can be completed at a virtual clinic with a CF Consultant.
  • Pre- Annual review clinics. We will see you ahead of your Annual review to complete tests required for your Annual review (eg: blood tests, CPET, chest x-ray etc). Where possible this will be one of your scheduled follow up appointment and not an additional visit. Your Annual Review will then be completed at the next scheduled clinic and can be completed at a virtual clinic with a CF Consultant
  • Urgent clinical reviews will be arranged as required.

If there are specific infection control issues relevant to your care, or if it is important to see you at other times then arrangements can be made.

Please allow plenty of time for parking prior to your face to face appointment and notify ASAP of any cancellations to all  ensure  smooth and efficient running of the service.

Face to Face clinics:

People with CF are at risk of cross-infection with bugs from other people with CF. Face to face clinics are therefore organised to minimise the risk of this happening. We allocate you a specific appointment time to help with this and aim to keep you separate from other patients. On arrival, you are allocated your own clinic room and then (apart from height and weight measurements) all other activities take place within that room.Each room is cleaned before and after use to CF standards of care.

Virtual Clinics:

Virtual clinic appointments by ‘attend anywhere’ have been introduced during the COVID pandemic with home monitoring and will continue to form part of your CF care between face to face appointments and we hope you find these a safe and convenient way to access your CF care. The link will be sent to you to access appointments.

For all Face to Face and virtual clinics  , please have your recent spirometry readings ( if appropriate)  available ahead of the clinic ( see Tips below!)

Tips for a successful virtual appointment!

Please ensure you have any spirometry data , oxygen saturation data, any BM readings and recent weights available to maximise the effectiveness of your appointment.

Consider sending a cough swab/ sputum sample in a week before your appointment date so results are available for you

Think about where to take the Video call – good lighting is helpful, good wifi reception, ensure you will not be interrupted during important and sensitive discussion

If there are technical problems we can problem solve together by telephone and usually resolve this with you!

Each clinic is attended by at least one CF Doctor and /or CF nurse ( depending on the Clinic list – see ‘how are clinics run’) and members of the Multidisciplinary team.

Those available include:

  • Clinic receptionist – to check your details are up to date and inform the team of your arrival (please inform of updated mobile numbers etc.)
  • Clinic nurse – they will measure height, weight and an oxygen level
  • CF Specialist nurse – they will discuss any specific issues and provide support, check your  lung function and perform any routine CF care such as flushing of devices.
  • CF Specialist Dietitian – to support your nutritional needs
  • CF Specialist Physiotherapist – may take respiratory samples, review chest and airway clearance techniques, adherence and nebuliser use,  musculoskeletal and pelvic floor screening, exercise testing and offer advice on exercise.
  • A CF Specialist Psychologist is available to offer support as needed.
  • CF Doctor – to review the information gathered by the multidisciplinary team, undertake a physical examination and make any specific decisions about investigations and care. In the Nurse led clinic the Nurse specialist takes on this role but liases closely with the CF Consultant team about your care.

The Royal Devon University Hospital Trust is a teaching hospital so you may meet medical students and junior doctors during your visit to the CF clinic – please let us know if you would prefer them not to attend for any reason.

We ask that you keep a record of your future appointments with us, and let us know with as much notice as possible if you are unable to attend – at least 72 hours’notice for routine appointments, and at least one week for an annual review. By cancelling your appointment ahead of time we will be able to offer the appointment to another person and ensure a smooth and efficient running of the service.  Please email: rde-tr.exetercf@nhs.net

Thank you for your help with this.

Inpatients

Patients with cystic fibrosis may be admitted to hospital for a variety of reasons including:

  • A more severe chest infection
  • A planned course of intravenous antibiotics
  • Minor surgical procedures
  • General support and education about treatments to help establish good routines
  • Other complications of cystic fibrosis

For some this is a very rare occurrence and for others it may be a more regular event. One young person who requires regular treatment likes to see it as a ‘Spa treatment for my lungs’!  During your stay we encourage you to take the opportunity to rest, sleep, eat and exercise, allowing us to support treatments when you are unwell and continue to support your education about any aspects of CF care during your stay.

If you do need to be admitted, please bring all your medication, physio and nebuliser equipment with you, together with a small supply of any supplements taken and feed – this avoids any break in treatments if they are not immediately available from pharmacy. Any medication will need to be handed over to the nursing staff and will be kept in a locked cupboard unless there are special circumstances.

Inpatient stays will be on Culm ward (East or West) on level 2. Occasionally for infection control reasons you may be looked after on another medical ward. All admissions will be in a single dedicated side room with single use toileting facilities, usually en-suite. During the stay you will be seen by members of the CF team on a daily basis from Monday-Friday, with physio input available over the weekend.

You will be advised on infection control measures relevant to your individual situation during your stay on the ward. Infection control is really important in keeping you and others safe so we encourage you to stay within your room, use good hand washing techniques and avoid chatting at the nurses desks.

Meals cards will be available during your admission.

A small fridge will be available in your room for storage of extra snacks.

Wi-Fi is now available throughout the trust.

We have introduced this to help ensure you make the most out of your inpatient stay and are clear on the conduct we expect from you when staying on the ward. Please click on the link to access Patient Code of Conduct.

We know that the vast majority of patients and families already adhere to these requests but the document is available for everyone to avoid confusion. If you would like to discuss any related issues please do not hesitate to contact the CF team or Ward Matron.

Annual Review

All patients with CF undergo a series of screening/monitoring investigations every year which are then discussed in a more detailed appointment called the Annual Review. At this appointment we assess progress over the previous year, screen for complications and pull all information together. This allows us to plan any future treatments or investigations for the forthcoming year. In some cases this may happen over a series of appointments.

Leading up to your annual review we will request the following:

  • A food diary (a detailed snapshot of everything eaten over a 3 day period) will be sent out well ahead of time or is downloadable for the Nutritional resources section of the website, to allow our dieticians to assess your intake and nutritional needs.
  • A Physiotherapy assessment to review your:
    • airway clearance methods, nebuliser and inhaler technique – please bring all of your physio equipment to this appointment
    • postural and continence assessment
    • exercise review (including an exercise test so remember to wear suitable clothing!)
    • Cardiopulmonary exercise test (CPET) giving us more detail  on how your lungs are functioning in exercise
  • An annual Chest X-ray may be requested
  • Any additional imaging relevant for your individual care – this may include a liver ultrasound, or a DEXA scan to look at bone strength
  • Blood tests – these help to screen for evidence of allergic lung disease (ABPA), liver and kidney function abnormalities and bone health, blood sugar abnormalities and CF related diabetes. Vitamins levels are checked to ensure we are giving you the correct amount of supplement.
  • For those with concerns about possible CF related diabetes a continuous glucose recording (CGM) may be requested.
  • Our CF Psychologist will ask you to complete a screening questionnaire and will meet with you to talk over the impact CF is having on your life at this point in time. This is an opportunity to identify if you would like further support and is a really important part of the annual review process in supporting you and your family.

The annual review appointment itself will be a longer appointment than usual so please allow extra time. We take this opportunity to review all aspects of care including any research trials you may be eligible for, microbiology results (germs on cough swabs/ sputum) and any infection control issues relevant to you, number of days of IV antibiotic treatment and financial support issues. You will of course have the opportunity to ask questions and raise any concerns. A clear plan of management will be discussed with you based on this information.

The review of results, discussions and plan of care will be summarised in a letter and sent to you as soon as possible after the appointment.  Health details are added anonymously, with your consent, to the national CF registry database as part of the National Audit of CF Centre Care.