FREQUENTLY ASKED QUESTIONS

Firstly, write a log of what has happened so that you have a clear record. Include dates, times, location and the batch numbers of the vaccination.  Batch numbers will be on your daughter’s vaccination record and can be obtained from the school nursing service and you GP surgery.  Write this log as soon as possible so the details are fresh and accurate.

Keep a diary and write down all the symptoms that your daughter is experiencing on an ongoing basis with as much detail as possible. Include dates of any appointments and try to summarise what was said during the appointments and any tests and results.

The known side effects are listed on the Patient Information Leaflets which are available online or from the school nursing service or GP who administered the vaccine.

Cervarix is the brand of HPV vaccine administered by the UK health services from 2008 to Aug 2012. The Patient Information Leaflet (PIL) can be accessed here.

Gardasil is the brand of HPV vaccine administered by the UK health services from Sept 2012 to the present. The Patient Information Leaflet (PIL) can be accessed here.

Mostly side effects will clear after a few days, however for some girls the side effects may persist.

Researchers in Denmark have included the following in their list of observed possible side effects:

• Headache (severe debilitating headaches)
• Orthostatic intolerance (syncopal attacks, fainting)
• Fatigue (mental and physical)
• Cognitive dysfunction (inability to concentrate, impairment of short term memory, brain fog)
• Disordered sleep (new onset insomnia)
• Visual symptoms (sensitivity to light, intermittent blurring)
• Gastrointestinal symptoms (nausea, bloating, abdominal pain, change in bowel habits)
• Neuropathic pain (burning, stabbing pains)
• Motor symptoms (involuntary muscle activity, tremor)
• Dyspnoea (air hunger, chest tightness, chest pain)
• Skin disorders
• Bladder dysfunction (frequency, urge, incomplete emptying)
• Limb weakness (muscle weakness, particularly in legs, limited walking distances)
• Limb pain
• Vascular abnormalities (changes to skin colour, blotchy skin)
• Menstrual problems (irregular periods, heavier periods, pain)
• Sicca symptoms (dry eyes/mouth)

Yes, it’s very important that any suspected side effects to the HPV vaccination are reported to the relevant pharmacovigilance agency. In the UK this is the MHRA and adverse reactions to drugs and vaccines are reported via the Yellow Card Scheme

• Report to your GP in person and try to do this calmly. Ask your GP to submit a Yellow Card report to the MHRA (Medicines and Healthcare products Regulatory Agency) and ask them to include ALL the relevant information in as much detail as possible. Whenever you daughter receives a confirmed diagnosis or positive test results, you will need to remind your GP submit an update to your daughter’s Yellow Card report (or you can ask for the information to do this yourself).

• Follow up with a letter to GP with dates and details of reaction. Ask for a written acknowledgement.  This is important. In the UK the Department for Work and Pensions (DWP) will require access to the medical file in the event of a Vaccine Damage Claim in the future (note that there is a 6 year time limit), so it’s important the information on file is detailed and accurate.

• If your GP does not submit a Yellow Card then go the MHRA website and complete a report yourself. Include as much detail as possible and provide updates to the MHRA with any changes to symptoms or diagnosis and with positive test results. The Yellow Card submission form is accessed here.

• If the vaccination was done at school write to the Head Teacher and the School Nursing service (the School Secretary can provide the address), notify them that your daughter has suffered a suspected adverse reaction to the HPV vaccination and provide details of her symptoms.

• Keep copies of all letters and emails you send and receive in a file.

Some schools find it difficult to understand the types of symptoms and conditions that girls are suffering with following HPV vaccination and some schools may have concerns the low attendance or intermittent attendance will affect their attendance statistics and OFSTED assessments. It’s important to give the school as much information as possible and to keep them updated with your daughter’s progress and any new developments.

• Get a letter from your GP stating symptoms and diagnosis
• Make an appointment with the Head Teacher and Head of SEN to discuss adjustments that are required
• Keep a log of communications and follow up meetings with written confirmation of what was agreed
• Speak to your daughter’s Form Tutor and ensure requests for exam arrangements are done in good time – extra time, breaks and an alternative room with natural light are amongst the concessions that can be requested. Medical evidence will be needed, so arrange this with your GP or hospital consultant.

Your daughter may be entitled to special help with her education, but how easy this is to secure varies amongst schools and Local Authorities. The Department for Education guidance: Supporting Pupils at School with Medical Conditions can seem ambiguous, so it may also help to seek advice from outside organisations, such as support groups and patient groups.

• Speak to Head of SEN and ask whether an Education and Health Care Plan is needed and discuss how this can be put in place
• The school may arrange tuition at home in some circumstances
• The school may arrange for invigilation of exams at home in some circumstances
• Those going to University can apply for Disabled Students Allowance and make use of the university support services

You may find some doctors are dismissive of your daughter’s symptoms, or they believe there are psychological reasons for the symptoms. If you feel your GP or hospital consultant is not taking your daughter’s symptoms seriously, it’s important you stay calm and assertive and the following steps may help:

• Make a double appointment with your GP so that you have time for discussion
• Write notes and prepare what you want to say. Decide what outcome you want to achieve – for example referral to a particular consultant or a request for a particular test to be done
• List symptoms clearly and grade the severity of symptoms (1-10, with 10 being worst)
• Take photographs and use video – for example with seizures it is useful for doctors to see what is happening, so ask another family member to do this if possible. Take photographs of colour changes to the skin and any rashes
• Get your daughter to write a symptom diary and include diet, activity, sleep, attendance at school etc

The tests arranged to investigate your daughter’s symptoms will depend on her symptoms, but you should always consider that the symptoms may not be connected with the vaccination and there may be an underlying illness, so make sure you ask for appropriate health checks to be done (for example heart, blood pressure, blood tests etc).

Do some research before your appointments. A sitting/standing heart rate/blood pressure test can be done as a basic test for POTS (postural orthostatic tachycardia syndrome). A 24hr or 7 day EEG will show the extent of tachycardia.  Tests for vitamin or mineral deficiencies are often helpful.

Many girls who develop health problems after HPV vaccination are told they have chronic fatigue syndrome and are sent for CBT and told to do graded exercise without any basic tests being done. If your daughter is diagnosed with Chronic Fatigue Syndrome and she experiences dizziness, lightheadedness, nausea or chest pains, you could ask your doctor to refer her for a POTS assessment or or tests to assess her autonomic nervous system.

Doctors generally do not like patients to show them reams of printouts from the internet, particularly when they come from anti-vaccination websites. Select material carefully and make sure it comes from a credible source for example research papers and articles from medical journals and information from recognised patient groups and charities.

As mentioned previously, a clear list of symptoms with an indicator of severity is very helpful.

This will depend on the diagnosis. There are support groups for specific medical conditions including POTS UK, Dysautonomia International, Invest in ME, Burning Nights (for CRPS).

Financial support may be available in the form of Disability Living Allowance, Personal Independence Payments and Carers Allowance but this will depend if the eligibility criteria is met. If a parent has had to give up work to look after their child, it’s worth discussing with the Tax Credits Office, who will give advice about eligibility and qualification for Tax Credits.  The Citizens advice Bureau will often advise on other forms of financial help.

If your child has a long term medical condition, you could also request a Carer’s Assessment from your Local Authority. More information for carers is available here.

Alternative therapies are reported to have been of benefit to some girls and they include nutritional support, the use of supplements, homeopathy, chiropactic etc.  It’s important to appreciate that each girl is different and they react differently to medications and alternative therapies, even if their symptoms seem very similar, so what has resulted in improvement for one girl might not bring about the same result for another girl.

Our experience of speaking to many families of girls who developed new health conditions after HPV vaccination has been that many girls can become hypersensitive to medications and even ‘natural’ supplements, so it’s generally prudent to start at very low doses, unless directed otherwise by a healthcare practitioner.

Even if these alternative therapies help, it’s important that you remain in the NHS system and keep your GP/consultant updated of progress, so that these doctors remain aware if your daughter is still unwell.

Also remember to update the Yellow Card with the MHRA. It is important for the authorities to have visibility if girls remain unwell for any period of time.