For us infertiles in the UK, we are incredibly lucky to have the NHS to provide us with treatment and support, free at the point of use, a privilege not available in many other countries. But fertility testing and treatments can be confusing. Add on top of that an NHS service where you are never quite sure you are getting what you are entitled to and where do you end up? In the swamp of uncertainty. This post sets out all I have learnt about working the system, knowing what to expect, how to know when to challenge and what to do when things go wrong.
What tests and treatment should you expect?
NICE Guidelines form the basis of what you can expect from the NHS
The National Institute for Health and Care Excellence (NICE) provides advice to the NHS on effective, good value healthcare based on evidence. The NICE guidance to the NHS on fertility assessment and treatment is available here: NICE guidance Fertility problems: assessment and treatment. These guidelines will provide you with information on what testing and treatment you can expect from the NHS at each stage of your treatment. It outlines how long you should wait before going to a GP (which differs depending on age), what initial tests they should do depending on your circumstances, what further testing should be undertaken when referred to specialist fertility clinics etc. It is also sets out best practice for what should be offered in terms of assistive reproductive technology. Should is the operative word here and NHS organisations are not compelled to follow recommendations in the NICE guidance.
But NHS organisations are not required to follow the guidance and treatment does vary
Understanding what you should be able to expect from the NHS in terms of your fertility assessment and treatment puts some control back into your hands and provides a basis for you to gently and constructively challenge the level of NHS care you are receiving. If your treatment is deviating from the NICE guidelines, it is OK to ask why. Chances are that the reason will be lack of resources or funding, which was the explanation provided to me when I enquired why my cycles on the fertility drug Clomid were not monitored by ultrasounds to check for overstimulation of the overies or cysts. Lack of sonographers was the answer. Fair play. But the knowledge that my Clomid cycles should have been closely monitored for adverse side effects and weren’t was a factor that I took into account when deciding whether or not to continue on Clomid. It is always worth checking why the NICE Guidelines are not being followed just in case it is an oversight or lack of familiarity with the guidance, which could be an issue with GPs who (understandably) don’t deal with cases of infertility every day.
Sometimes deviation from the NICE guidelines can play in your favour. I tend to keep quiet in these instances. For example, my first set of blood tests ordered by my GP to better understand my fertility status included a test for prolactin. This is specifically not recommended as an initial test in the guidance. But extra non-invasive tests are fine by me and it turns out that my prolactin was outside the normal range, so it was a surprisingly good calland the NHS have tested my prolactin twice since.
NHS funding for assisted reproductive treatment (e.g. IVF) varies by local area
NICE recommend what IVF treatment it thinks should be made available, including age limits, number of cycles and boundaries for weight and hormone testing. However, funding for IVF is determined by your local Clinical Commissioning Group (CCG). CCGs are responsible for commissioning health care within their local area to meet the health needs of their local populations. The result is that the healthcare one CCG choses to fund (including for IVF) can vary from a neighbouring CCG, producing what is known as a ‘postcode lottery’. You all pay the same taxes, but don’t all have access to the same services.
To find your local CCG you can use the map and postcode look up by Allies. Once you have found your CCG you can then search on line for its policy on IVF or other assisted reproductive treatment. If you are having trouble finding the policy document, Fertility Fairness has researched all of the policies in England and put the information into an easy to read spreadsheet so that you can see what your area offers. Your CCG may not fund assisted fertility treatments or may have tighter restrictions than those recommended in the NICE guidelines, for example around age limits, number of cycles offered and time you have to wait before being offered support.
You can raise objections to the lack of funding for fertility treatments
The Fertility Fairness website has helpfully created template letters that can be sent to MPs, CCGs and other relevant organisation to raise objection to the lack of funding for assisted fertility treatments. With the current constraints on NHS funding and the recent general election and possible change to your MP, now is a perfect time to raise this issue.
Understanding your results and next steps
Requesting your test results and medical record
For anyone who has experienced the same frustrations as me in getting specific information on test results from your medical providers, there are a few solutions. Organisations are understandably reluctant to give exact test results out over the phone if you have called using a publically available number on their website. They may inform you to wait until you next see the consultant (which can be a very long wait). Remember that you have the right, under the Data Protection Act 1998 , to access your medical records. You can ask your medical practitioner informally during a consultation whether they can provide you verbally with all your test results there and then, avoiding the time and cost of making a formal application. If it is donkey’s years until your next appointment or you would like a copy of your medical records in writing, then here is how you can do it:
You need to make a request for your medical records directly with the heathcare provider that provided the treatment, it is known as a subject access request. Each NHS organisation may have a different system and application process for sharing your medical records with you.
Accessing your GP records online
You should be able to access your GP records online and it should be free of charge. Searching for the term ‘access to records’ on your GP website may provide you with more information about how to register for this online service or speak to reception at your GP practice. You often have to go in to your GP practice and provide proof of address and photo identification in order to set up your account. Online access to medical records can only be authorised by a GP and therefore access may not be granted immediately but may take a few days or weeks.
Once your account has been activated, you can see your test results (including helpfully the NHS reference ranges for the results), prescriptions and some other notes/GP visits. Results from hospital tests will only show on your GP record if the hospital has copied the results to your GP, which does not always happen. You can ask your consultant to make a note on your file to copy all results to your GP. At times I have been able to see blood test results from my hospital on my online GP record quicker than I have been able to get a sensible answer from the hospital.
Another helpful benefit of having access to your GP records is that you should be able to see the date of your first GP appointment in which you raised fertility issues, as this may be relevant for calculating when you are eligible for IVF and other assisted fertility treatments.
Accessing your hospital records
You have a right to access your hospital records and the process for applying for them will be different for each organisation. A good place to start is to search online for “access to medical records” and the name of your hospital. This should provide you with information on how to make a request. You are likely to be asked to complete an Access to Health Records Form by your NHS organisation and to pay an administrative costs for copying and posting your records (between £10-£50). If your hospital does not have any advice on their website about how to access records, you could try writing to them using this example template.
What you will receive from the hospital is a photocopy of your medical record, including test results and correspondence between your GP and hospital and the hospital and you.
Interpreting your test results
Hospital admin: “Are you a medical professional?”
Hospital admin: “Then why do you want to see your exact results, you won’t know how to interpret them anyway.”
A conversation I had with the hospital in which I had to smile (down the phone) and bite my tongue. The purpose for me seeking my test results is not to self-diagnose. The reason is to allow me to be better informed about my health, to be able to ask relevant questions of my health professionals and to seek further guidance on why certain tests have (and have not) been done and what they mean, to find out whether a result worryingly close to the edge of what is considered ‘normal’ or slap bang in the middle. All too often we are given vague information such as “we tested your hormones” and the results are within “normal range”. But which hormones, and how ‘normal’ were they?
Having access to your medical records allows you to see:
What you have been tested for
What you have NOT been tested for
The exact results of the tests
Once you have your test results you can:
1. Check what tests have been undertaken against what is recommended in the NICE Guidelines. If there are tests that NICE recommends should be done in your circumstances that have not, raise this politely with your doctor and ask whether it is worth that test being done.
2. Seek additional testing, either from your NHS practitioner or get tested privately. Some tests that can impact fertility and are not provided regularly as part of exploration of fertility by the NHS are vitamin D deficiency, celiac’s disease if you have gut or autoimmune issues and a full thyroid panel (as opposed to just TSH). MediChecks is a private lab that I have used before to check hormones using an at home finger prick test that you send to the lab by post. is
3. Check where your results fall within the reference ranges. Note that reference ranges change depending on the organisation or laboratory. NHS reference ranges tend to be rather wide, so what may be considered a ‘normal’ result for the NHS may not be considered normal by a functional medical practitioner. It is also worth bearing in mind that falling within the desired reference range does not necessarily mean that your result is optimal for fertility. That is why it is important to understand where within the reference range you fall.
NHS records often have the reference range stated next to the test result.
Reference ranges are available on GP notebook using the search bar to find what you are looking for. You are only allowed limited searches on this per day.
For interpreting thyroid results, there is useful information on optimal ranges on the Stop The Thyroid Madness website.
For optimal (rather than normal) hormone reference ranges an excellent resource is available here by Dr Sara Gottfried MD.
Be careful to check the units from your test are the same as the units for the reference range you are using (e.g. ng/ml, pg/ml etc). Converters are available online if you need to change the unit in order to understand the result.
4. Take your results to other specialists, such as functional doctors, naturopaths etc for their opinion and support.
Understanding next steps
Knowing what to expect from the NHS and when can be tricky. The NICE Guidelines should give you an indication of what is coming next. However, it is extremely helpful to have the name, telephone number and email address of your consultant’s secretary, something to ask for in a consultation. This will avoid you going through the public telephone lines (which are not always answered) and allow you to make contact with someone who can arrange appointments and understands your hospital’s policies and process.
What you can do when things don’t go to plan
Patient Advice and Liaison Services (PALS)
If you are concerned about the level of service that you are receiving from the NHS, or you are unhappy with your medical practitioners, you can contact PALS for support. PALS provide confidential advice, support and information on health related matters to patients and their families. There is more information on the service PALS provide here and you can find the contact details for your local PALS using this link.
It is important to bear in mind what you should be able to expect from the NHS (through the NICE guidelines) and that you should always be treated with respect, dignity and patience. Making a complaint that you are not being provided with a fertility treatment or service that the NHS does not provide to is unlikely to result in positive action, but PALS should be able to provide advice on what to expect from your medical professionals and how best to proceed.