Admin queries

Please email khn-tr.rheumatologydepartment@nhs.net or telephone 0208 934 6156, option 2.

Following the receipt of your rheumatology referral a rheumatology consultant will triage this and decide whether you need to be seen routinely or urgently within 3 weeks. An appointment will subsequently be made and sent to you via post.

If you need to rebook your appointment please telephone 0208 934 6156 or email khn-tr.rheumatologydepartment@nhs.net

We would appreciate if you could give us as much notice as possible when changing your appointment.  This will allow us to offer another patient in need, the opportunity to be seen earlier.

Check your appointment details and plan your journey to the hospital. We often have outreach clinics at Raynes Park, Surbiton, Teddington and Molesey, so it is important you check the location before travelling.

If you can, it’s a good idea to bring a list of medications you are taking with you to the appointment and any previous clinic letters relating to your condition. It may also be helpful to bring a list of questions that you’d like to ask so you get the most out of your appointment.

Every effort will be taken for telephone consultations to run to time but, please be aware that generally if your appointment time is in the morning we may call you anytime during the morning and the same if your appointment time is in the afternoon, we may call you anytime during the afternoon. Generally, telephone calls from the hospital come from a withheld number.

Please ensure you have provided the hospital or your GP with your correct contact details, if you need to change these please contact the rheumatology admin team either by emailing khn-tr.rheumatologydepartment@nhs.net or telephone on 0208 934 6156 (option 2).

We understand that it is difficult to fit medical appointments into a busy life. To give you an idea of how long your appointment may take, you may be in our department for up 2 hours.

At your appointment you will be welcomed by a receptionist who will check you in. You may be seen by a nurse and have a blood test and some observations taken. This can take place before or after you are seen by the doctor. 

Patients are allocated approximately thirty minutes for a new appointment and fifteen minutes for a follow up appointment.

Radiology contact numbers: 0208 934 2150 or 0208 934 3342.

MRI contact number: 0208 934 3467 or 0208 934 6552.

Once you have received your results via the consultant, you can request a copy of the report via the departmental email address khn-tr.rheumatologydepartment@nhs.net

Please contact the Medical Day Unit directly on telephone 0208 934 3674.

Please email us on khft.rheumatologybiologics@nhs.net and we will be able to direct your query.

The most important action for you to take is to plan ahead. We know that running out of medication can bring worry and distress. If your first prescription was provided by the hospital you may need a review in the rheumatology clinic before a repeat prescription is arranged to ensure it is safe to continue with the medication.

If your medication was a non-steroidal anti-inflammatory (NSAID) medication, your GP or a community pharmacist can advise you on continuing use of these medications. Our rheumatologists do not provide repeat prescriptions for NSAID medications as these are available over the counter or on prescription from a GP.

If your medication is a disease-modifying anti-rheumatic (DMARD) and the rheumatology team are happy for you to continue with your medicine they will send a shared care agreement to your GP to ask them to continue giving you the medicine on a repeat prescription.

If you have been unable to receive your DMARD medicine from your GP for any reason, in urgent situations you may ask our team to provide the prescription. Allow at least seven to 10 days for the prescription to be done and processed by the hospital pharmacy. Please email khn-tr.rheumatologydepartment@nhs.net to request the prescription. It is important to include your full name and either your date of birth, NHS number or hospital number and the prescriptions you require to avoid delays. We are only able to supply your rheumatology drugs, not all of your usual medicines.

There are some injectable medications that are only prescribed by the Rheumatology team.  Various healthcare companies deliver these and the company normally sends us an alert when a prescription is due.  If there are any problems with the delivery and supply of these drugs you need to contact us by emailing khft.biologics@nhs.net

If you only have one or two injections remaining and no scheduled delivery you may require a blood test in order to receive your next delivery. The most common cause for an interruption of medication supply is a lack of blood test results or a blood test which has been performed too long ago to be reliable.

The homecare delivery company who supply your sharps bin will collect this from you. Let them know when they next call to organise a delivery and they will bring you a replacement.

PIFU puts you, the patient, in control of when you are seen by the rheumatology department. It means spending less time attending hospital appointment, but still having access to clinical support when you need it. Most patients with stable long-term conditions do not require regular follow up by the hospital team. Research has shown that regular visits do not help to prevent your condition returning or identify new problems.

condition is now

The service is quick and easy to use. If you experience a flare-up of your symptoms, contact the Rheumatology department using the details on your PIFU card or this leaflet, and explain to the team that you are experiencing a flare-up and you need to be seen. The team will agree a suitable appointment date and time with you, within the next 2 weeks. Please note that the operator cannot give any clinical advice. 

Please remember, it is important that you are available for your appointment. If you find you are unable to attend, please tell us in advance, so we can try to give your appointment to someone else who needs it.

5 easy steps:

  • Email khn-tr.rheumatologydepartment@nhs.net  stating ‘PIFU’ and your name in the email subject line or telephone: 020 8934 6156 (option 2)
  • Explain to the rheumatology team that you are having a flare-up and need some clinical advice.
  • The team will review your concerns and determine whether you need a telephone or face-to-face appointment.
  • If the team think you need an appointment, we will contact you to agree an appointment date and time. We will arrange an appointment for you within 2 weeks.
  • You will attend the clinic appointment and we will specify if this will be a telephone or a face-to-face appointment.

You should call the PIFU line if you are experiencing a flare-up of your condition and need to be seen. If your most recent appointment was face to face, the PIFU card given to you will highlight symptoms to look out for to help you decide when you need to contact us. If you had an appointment via telephone or video link, your clinician should have advised you which symptoms to look out for and when to call back.

We will explain to you at each appointment when we would like to see you again.  Typically you will see a doctor at your first appointment and at follow up appointment you will be seen by either a doctor or a specialist nurse. If your disease is active or if you have started a new medication for your condition we tend to see you more often.  If your disease is stable we may recommend we place you on a patient-initiated follow up (PIFU) pathway which means we see you less regularly but you can contact us should your symptoms or condition flare.

If you are on a drug that suppresses your immune system (ie reduces your body’s defence mechanism against infections) and if you come in close contact with anyone who has chicken pox or shingles you should contact your GP for advice as treatment may be required. Close contact means:

  • Being in the same room as someone who has shingles for more than 15 minutes or having face to face contact
  • Contact with someone who has shingles on many parts of their body or where it is exposed eg on the face.

Where possible you should keep away from anyone you know who has chicken pox or shingles.

About your condition

If you do get a flare-up of your condition you should:

  • Take regular prescribed painkillers (no more than the recommended dose in a 24hr period)
  • Take regular prescribed anti-inflammatory (again no more than the recommended daily dose)
  • If you do not wish to or can’t take an oral anti-inflammatory and only 1 or 2 joints are involved then you can use an anti-inflammatory gel/cream
  • If joints are swollen then you can use ice on them (cold pack or packet of frozen peas wrapped in a towel, 10-15 mins every 2-3 hours).
  • If the joints are stiff but not swollen then heat can be used
  • If things do not get better after 7 days then contact us for further advice.

Typically flares can last between 7 to 10 days before getting better. The rheumatology team will help you to learn how to manage your flares yourself. However if flares last for more than a week this can be a sign of greater disease activity. If this does happen, please contact us and a decision will be made about whether or not an earlier appointment is needed.

We monitor bloods when disease modifying medications (DMARDs) and biologic medicines are used. This is to ensure that the drugs are being used safely and not causing any harmful effects. Blood tests commonly monitored by the rheumatology service are:

  • Hb (Haemoglobin) The iron rich molecule of red blood cells which transport oxygen around the body.
  • MCV (Mean Cell Volume) This is a measurement of the average volume of red blood cells (this can vary if you have low iron stores or if you have pernicious anaemia).
  • WCC (White Cell Count) These are blood cells of the immune system. There are 5 types and this reflects the total number of all types .
  • Neutrophils. These are one of the white blood cells important in fighting bacterial infections. This can be affected by inflammation and medications.
  • Lymphocytes. These are white blood cell important in fighting viral infections.
  • Platelets. These are blood cells involved in maintaining blood clotting.
  • ALT (Alanine Transaminase) This is a liver enzyme that reflects liver health .
  • Creatinine. The level of creatinine in the blood is an indicator of how well the kidneys are working..
  • CRP (c-Reactive Protein) This is a protein that measures levels of inflammation. Helpful in measuring how active your disease is and whether your treatment is effective. Normal level is less than 5.
  • ESR (Erythrocyte Sedimentation Rate) This is a measure of inflammation. Helpful in measuring how active your disease is and whether your treatment is effective.

It is important to note that all blood values will fluctuate slightly through the day and you may see that occasionally blood values fall outside of the normal range.

About your medication

Feeling sick (nausea) is a common side effect of methotrexate, especially when treatment starts. This normally gets better, but for some people it may continue.

This feeling may be helped by:

  • Taking the methotrexate with or after food
  • Taking the methotrexate just before you go to bed, you may be able to sleep through this feeling of sickness
  • Making sure you take your folic acid on a different day to the day you take the methotrexate
  • Splitting the dose of methotrexate over a 24 hour period, e.g. if you usually take 20mg methotrexate once a week try splitting the dose to take 10mg on 2 consecutive days of the week instead.

Sometimes, the dose of folic acid can be changed but this should only be done after speaking to a doctor. Your doctor may tell you to take another tablet to reduce the feeling of sickness. The rheumatology team may also change your methotrexate tablets to an injection once a week.

It is important that you take your methotrexate regularly, so do not stop the drug without discussing it with the rheumatology team or your doctor first.

Injection site reactions include redness, itching, pain or swelling at the injection site.  They mostly occur 1 to 2 days after an injection and usually go away within 3 to 5 days.  They are most common during the first few months of treatment.  Sometimes injection site reactions can be due to the way that the injection has been given.

To help stop injection site reactions we advise changing where you give the injection each time. You can inject into the front of the thigh, outer upper arms and abdomen.  If you develop an injection site reaction it may help if you apply a cold compress to the site. Applying ibuleve or voltarol gel can also help alleviate symptoms.

If you keep having problems with reactions, contact us so we can advise you.

DMARDs (or disease modifying anti-rheumatic drugs) are medications that are given to reduce inflammation and prevent damage to the joints.  DMARDs include drugs such as methotrexate, sulfasalazine, hydroxychloroquine, leflunomide, azathioprine and ciclosporin.

There is no clear evidence that taking these medications affects surgery, in fact coming off them can cause a flare of your arthritis, which can be more of a problem. We therefore usually recommend that you stay on your medicines but let your surgeon know what you have been prescribed.

You may be asked to stop your medication for a while before and after surgery, but this depends on the medication being taken, the type of operation and the views of the surgeon.

Biologic treatments include the following drugs:

  • Certolizumab (Cimzia)
  • Etanercept (Enbrel or Benepali)
  • Adalimumab (Humira or Idacio)
  • Golimumab (Simponi)
  • Infliximab (Remicade or Remsima)
  • Rituximab
  • Tocilizumab (RoActemra)
  • Abatacept (Orencia)
  • Ustekinumab (Stelara)

Targeted synthetic DMARD drugs include:

  • Baricitinib(Olumiant)
  • Tofacitinib (Xeljanz)
  • Filgotinib (Jyseleca)
  • Upadacitinib (Rinvoq)

General advice is to stop treatment 2 weeks before any surgery and restart 2-6 weeks afterwards but you must check this with your surgical team and we can provide guidance if required. Once your wound has completely healed you may start your treatment again. If you are on an intravenous biologic (eg infliximab, rituximab, tocilizumab) please let us know if you are having surgery by contacting us so that we can advise you about what needs to be done.

If going on holiday, the medication needs to be taken with you including any injections you need for your condition.  If you get your prescription from your GP, please make sure that you get in touch with them in good time if you need more medication for when you are on holiday.

We would advise you to keep your medication in your hand luggage if you are flying.  We can give you a letter showing what medications you are prescribed by the rheumatology team. You will need this if you are taking injections with you on a plane.

Injections should not be placed in the hold of the plane as they can freeze and then become ineffective.  Take your injections in the plane with you as part of your hand luggage and allow for extra time to go through airport security.  Place the injections in a small cool bag with an ice pack, and put them in the fridge as soon as you get to your destination.

Shared care is the transfer of clinical responsibility from a hospital or specialist service to your GP to continue to supply a medication and the necessary blood monitoring required.

If your GP agrees to take on shared care responsibilities, you are advised to contact your GP surgery to find out how they intend to organise the blood tests and repeat prescriptions for you.

Vaccinations and your condition

If your immune system is suppressed due to medication, it is particularly important that you are adequately protected. If you are receiving treatment with immunosuppressive drugs such as methotrexate, leflunomide, azathioprine, mycophenolate mofetil, or a biologic (such as adalimumab, etanercept, infliximab, certolizumab, rituximab, tocilizumab, abatacept, secukinumab) you should avoid ‘live’ vaccinations: these include oral polio vaccine, yellow fever vaccine and german measles (Rubella). An alternative inactivated polio vaccine is available, if required.

You should also avoid contact, where possible, with adults or children who have received the ‘live’ oral polio vaccine, for six weeks after vaccination: in particular you should not change babies’ nappies, since they will excrete the live polio virus in their faeces for this time.

Vaccination against yellow fever may be an entry requirement for some countries, so discuss this with your GP before making travel arrangements. If you are planning to travel abroad, you should seek advice from your GP at least six weeks before your departure since some vaccinations may need ordering for you.

If you are on immunosuppressive medication such as Methotrexate or on a biologic medication, the flu vaccination (which is inactivated) is recommended on a yearly basis. Likewise, the pneumonia (pneumococcal) vaccine is recommended for all patients with rheumatological conditions on immunosuppressive drugs.