The Freedom of Information (FOI) Act gives members of the public the right to request information from public bodies like government departments or NHS bodies. Anything that’s on record can be requested, so long as it’s not subject to one of the defined exemptions.

In the trans community, a lot of activists use FOI requests to get information on the services involved in trans healthcare, particularly around topics like wait times and how much capacity services have. This is a great way not only to highlight problems, but to help people make informed decisions about their healthcare, particularly around whether to spend large amounts of money on private services. However, there are a number of common mistakes and pitfalls people often make in their FOI requests that can make the information gained less useful both to the requester and to others. Sometimes FOI requests are overused or misused, such as by:

  • Repeating work that someone has already done
  • Sending FOIs to organisations who already publish this information in a useable format, or are happy to answer the questions informally via email
  • Asking for data that is not useful or meaningfully comparable, or
  • Wording questions poorly in a way that allows organisations to give misleading or incomplete answers

FOI requests might sound like a complicated thing, but at the core, they’re actually pretty simple. You can make an FOI request just by contacting an organisation with the questions you would like answered. You can also use a tool like WhatDoTheyKnow to get in touch with the organisation and keep track of your requests. Normally, they should respond within 20 working days, and there are ways to complain if your FOI requests don’t get a satisfactory response.

In this article, we will look at some basic principles and rules of thumb you can use to get better use of FOI requests in the future.

At Gender Construction Kit, we’ve been providing the community with information about UK gender services, relating to referral criteria and wait lists, for some time now. We always try to ask for data in a specific format via a publicly-accountable forum. Not only does this ensure that the different figures we collect are meaningfully comparable to one another, but it also means we can make it easier for others to pick up where we leave off, and ensures that data collected by different groups is still easy to compare.

The following are general principles we’ve developed to try to achieve this:

  • Ask for information to be put on the service’s website before making a request. If the information is available on the website of a service, it is more likely to be seen by people who need to know the information. Ask for this via email before submitting a formal FOI request.
  • Work out who to send your request to.
    • Questions about national policies and protocols should be sent to one of NHS England, NHS Scotland, NHS Wales or HSC Northern Ireland, or occasionally to one of the national-scale Public Health organisations.
    • Questions about a specific clinic should be sent to a more local organisation that has the responsibility for operating the clinic. In NHS England, this will be an NHS Trust; in Wales and Scotland, a Health Board; and in Northern Ireland a Health and Social Care Trust. You can normally determine which organisation this is by looking at the website of the clinic or correspondence sent by them.
    • Questions about local prescribing policies should be sent to the organisation responsible for healthcare in that local area. This will be a Clinical Commissioning Group (in England) or Health Board (in Wales or Scotland).
  • Specify which clinic you’re asking about. Because gender clinics under a larger NHS Trust or Health Board that might contain many services, you should specify clearly in your request which clinic you’re asking about.
  • Make your request through WhatDoTheyKnow. If the response is publicly available, it can be used by other people in future looking at changes over time.
  • Check whether the information has already been requested on WDTK recently. Time spent by clinicians responding to these requests reduces the time clinicians could be seeing patients in.
  • Check whether historical data already exists. If you’re asking for data about past years, it is likely someone has already asked for it. The WhatDoTheyKnow archive is a good place to start, as is r/transgenderUK on Reddit. You could also try searching other social media sites like Twitter. Some NHS trusts (e.g. Tavistock and Portman) maintain “disclosure logs” listing past FOI requests and their responses. Failing all that, a bit of Googling or asking around could turn something useful up.
  • Use a consistent title so requests can be easily searched for. “Gender services - [Clinic name] - [Request type]” works well. This allows people to easily find all requests of this type if they are compiling information comparing different clinics.
    • Try to stick to the name the clinic uses for itself officially, rather than any past names or nicknames it might have. If you’re asking about the youth branch of a service that caters to both adults and young people, include the word “Youth”. Being consistent about names makes it easier for others to find your data.
    • If there are multiple possible names, try to use the same one that other people have been using in their own FOI requests.
  • Ask for data for a particular financial year or quarter. This makes it easier to compare data across multiple requests, as most information available is broken down by financial year, quarter, or month. For example, ask for “in FY 2020/2021 Q4” or “between 1st Jan to 31st Mar 2021 inclusive”. If asking for information as of a specific date, use the last day of that time period (for example “as of the end of FY 2020/2021” or “as of 31st Mar 2021”).
  • Make smaller requests where possible. Smaller requests are less likely to get rejected for costing too much. However, if you make multiple requests at once to the same organisation, it’s likely that those requests will get aggregated and costed together.

Depending on exactly what you’re asking for, there are other things you should think about…

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Waiting times

With the waits for assessment at some UK gender services now exceeding five years, good information on wait times is important not only for helping trans people choose which services to use, but also for raising awareness of one of the most important issues faced by trans people in the UK.

However, the information requested by many people often has one of two common issues:

  1. the request asks for information in inconsistent ways to other requests, or in ambiguous ways that can be interpreted differently by each service, making comparisons impossible, or
  2. the information requested gives a misleading picture of what the wait times for gender services actually are

These issues can result in very different wait time figures appearing in different places, which can make it difficult for people to trust the information.

To avoid these issues, you can:

  • Specify what type of average you want. There are a number of different types of “average”, such as mean, median and mode. Normally the most useful number will be the mean, like “average (mean) time in weeks from referral to first appointment”. If one service uses a different type of average to others, they can’t be compared.
  • Ask for a particular date range. Ask for people seen for an appointment at a particular time, like “patients seen between 1st Jan to 31st Mar 2021 inclusive”. If you don’t do this, some services will just say that information is already available on their website or in another request, even if that information is out of date. It’s also useful when comparing clinics to know if the data corresponds to the same time frame.
  • Specify that you’re asking about actual treatment or assessment appointments. Some clinics offer “informational” appointments solely to give information to future patients. If no treatment or assessment takes place in this appointment, including it can lead to misleadingly low wait figures.
  • Ask about initial appointments separately to follow-up appointments. Services may still be seeing patients for follow-up appointments, but have stopped providing initial appointments.
  • Ask for priority cases to be excluded from the average. Some services will prioritise some patients (for example, because they have already received a private diagnosis, asked for a referral from the GP years previously but were never referred properly, or are experiencing extreme distress). These cases don’t reflect how long people will normally wait and could result in misleading information.
  • Ask for transfers to be excluded from the average. Services may expect some patients to wait for less time if they have already waited elsewhere, most often for patients who have previously been seen by a youth service, but sometimes for other adult services. Including these patients in the average could make wait times look much shorter than they actually are.
  • Consider asking for minimum, maximum, IQR (interquartile range) to identify issues. This information will make it clearer whether there is a subset of patients who are having to wait for significantly longer or shorter times.
  • Consider asking how long it takes for patients to be approved for certain key treatments. Waiting times for a first appointment aren’t always the best measure of how long it will take to receive hormones or surgery, as different clinics may have different processes.
    • Ask for the wait since the previous stage in the process, rather than from the initial referral. Wait from the initial referral will include the initial wait time as it was for patients some time in the past, which is likely no longer an accurate representation of current waits.
    • Ask for the minimum time to be approved. Gender clinics see a variety of different people, not just people who will immediately want hormones and then surgery; asking for the minimum required time will produce more useful results.
    • Ask in terms of number of appointments. Clinics will generally hold this information in terms of number of appointments, rather than as time on the calendar; requests for this information in terms of time will likely be rejected for exceeding the maximum cost.
    • Ask for the average wait between appointments. Combined with the minimum number of appointments before approval, this will give an approximate time frame.

For example:

Please provide:

  1. the average (mean) time in weeks from referral to first treatment or assessment appointment for patients whose first such appointment happened last quarter (between 1st Jan to 31st Mar 2021 inclusive), excluding patients who have waited for a shorter time due to a wait at another clinic
  2. the minimum number of appointments a patient must attend at this clinic before being approved for hormone treatment, assuming that the patient has not transferred from another clinic
  3. the average (mean) time in weeks between treatment or assessment appointments for patients who received a follow-up appointment last quarter (between 1st Jan to 31st Mar 2021 inclusive)

When publishing the information you’ve collected, make sure to make it clear exactly what questions you asked, either with the data itself or by linking to the request on WhatDoTheyKnow.

Referrals

A significant problem around accessing gender services for many trans people is being properly referred to the service. Due to malicious intent, lack of knowledge, or accidents, patients may be incorrectly referred.

The specifications of the adult gender services in England, Wales, and Scotland allow for patients to refer themselves, providing one route to avoid these issues, but many gender services do not allow self-referral in practice.

Some gender services might not send a confirmation of the referral to the patient, which can leave many people believing their referral has been received and accepted when it has not, something they may only discover years later.

The following questions may help clarify the situation around these issues:

  • Ask who can make a referral. Some clinics will accept self-referrals, while others will require referrals to come via a GP or local mental health team.
  • Ask what information is needed for a referral. An incomplete referral will generally delay things. There may be a standard form for referrals, or there may just be a list of the required information. This information may help patients ensure they have all the necessary information ready before they speak to their GP. This is especially important for self-referrals, as lay patients will generally not have the same understanding of what’s going to be needed as compared to a medical professional.
  • Ask whether a confirmation letter will be sent when a referral is received. This can help avoid the issue where someone thinks they’ve been referred but the referral was misplaced, sent to the wrong place, or never actually made.
  • Ask when a referral might be discharged without being seen. Sometimes, a gender service might decide that it wouldn’t be appropriate for them to see a particular patient at this stage. Knowing when this might be the case can help avoid referrals that don’t go anywhere.

For example:

Please state whether referrals will be accepted from each of the following:

  1. patients (through a self-referral process)
  2. GPs
  3. local mental health or CAMHS services

Please provide a list of:

  1. the information that must be provided in referrals to the service
  2. circumstances in which a patient on the wait list but not yet seen for an appointment could be discharged from the service

Please state whether new patients receive an acknowledgement of their referral, and if so, within what time frame.

Transfers between services

Some clinics will prioritise patients differently if they were previously being treated by, or on the waiting list for, another clinic. This can massively affect the wait a new patient can expect depending on their circumstances, as well as distort the overall waiting time statistics for a service.

For example, consider someone who has waited for two years to be seen at a gender service in Scotland, and who hasn’t yet been seen. They then move to England and are referred to an NHS England gender service. Depending on the exact procedures around referrals at the service they are referred to, their existing wait in Scotland might be taken into account, allowing them to access treatment two years earlier.

It’s important to know whether a clinic prioritises patients like this, as well as which patients get prioritised, so that trans people can get a better picture of what their actual waiting time will be like.

If you want to get information about this, make sure to:

  • Ask separately about the different situations people could transfer service in. A new patient may have transferred from a youth to an adult service, another service in the same nation (e.g. from one NHS England service to another), or from a service in one nation to another nation (e.g. from an NHS Scotland service to an NHS England one). Many services have different rules for each situation.
  • Ask about patients who have not yet been seen from the service they are transferring from. Many services have different rules for this situation than if a patient is already part of an active patient load.
  • Ask about whether transfers are accepted in each situation. Some clinics will not accept a transfer of care in specific situations. Knowing this in advance can help avoid unnecessary waits for treatment.
  • Ask about whether people will be seen more quickly if they have already waited elsewhere. This can help people who are moving (e.g. from Northern Ireland to England) decide which service they should ask to be referred to.

For example:

For each of:

  1. patients previously referred to a youth gender service (e.g. GIDS)
  2. patients previously referred to another adult gender service
  3. patients previously referred to an adult gender service in a different UK nation

please indicate whether:

  1. patients referred to you, who have previously been added to another wait list but had not yet been seen, would have this previous wait taken into account in their position in the queue for your service
  2. patients referred to you, who had been seen for a first appointment for the previous service, would have this previous wait taken into account in their position in the queue for your service

Clinic throughput

Even if requests relating to current wait times are precisely worded, they can still give a misleading picture.

The statistics on wait times provided by gender services relate to appointments that have happened in the recent past. The wait for those appointments may have been much shorter than how long people who are only now joining the queue will wait. Information about the “throughput” of a service, i.e. how many people are at various stages of the process in a given time frame, can help estimate these future waits.

Make sure to:

  • Ask for both numbers of referrals received and referrals accepted. Not all requests received by a service will be accepted (for example, if a GP does not provide adequate information in the referral or refers someone outside of the correct age range for the service)
  • Ask for both first appointments carried out, and follow-up appointments carried out. Some services will focus primarily on seeing their existing patient load, giving a misleading impression of how fast a wait list is being processed.
  • Ask about the number of patients on the waiting list and active patient list as of the end of that time period.

For example:

For the period 1st April 2020 to 31st March 2021, please provide the number of:

  1. referrals received
  2. referrals accepted
  3. first appointments carried out
  4. follow-up appointments carried out
  5. discharges from the service

Please provide the number of patients who, as of 31st March 2021, are:

  1. currently on the wait list for the service
  2. currently an active patient at the service

Funding

Which medical treatments are funded for trans people can vary depending on which local health authority the person’s GP is in. Recent examples of this are access to funding for fertility preservation in England and facial hair removal in Wales. This can result in trans people in some areas having to self-fund or crowd-source important parts of their transition.

Asking questions about funding will be a little different from asking questions about waiting times. This information is much less subject to change, and is typically set at either a national or local level, rather than per gender clinic.

You will need to:

  • Work out which body will hold the information you need. Funding is typically not decided by a specific gender clinic, but instead by the national health service (e.g. NHS Scotland or HSC NI), or by the health authority local for the patient (e.g. a CCG in England or a Health Board in Wales). This can mean that people attending the same gender service from different parts of the country might have different funding situations.
  • Check treatment protocols for this information. Often funding information is specified in protocols or service specifications published by the relevant body. Even if you can’t find exactly the information you’re looking for, reading through these documents might give you a better idea of how to frame your question.
  • Specify the treatment carefully. This is especially important for treatments like hair removal, where facial hair removal is likely to be treated differently to hair removal required as preparation for surgery.
  • Specify whether you’re asking just for patients attending a gender service, or any patient. Often there will be a generic aesthetic referral funding process that differs from the process for patients of a gender service.
  • Ask what is required for funding. NHS funding is often dependent on the patient meeting certain prerequisites. For example, funding may only be available to people with a formal diagnosis, people on hormones, or people with a particular gender identity.
  • Ask how much funding is available. Some treatments, such as facial hair removal, are typically funded from a limited budget per patient, or for only a limited number of sessions.

For example:

Please provide:

  1. The list of prerequisites that must be met before a patient receiving treatment from a specialist gender service may receive funding for facial hair removal.
  2. In such cases, how much funding is available.

What if my request is ignored or refused?

FOI requests are meant to get a response within 20 working days. This means that within 20 working days you should have a message from them telling you either:

  • That they will be providing the information (though they may still need a little more time to actually provide it).
  • That they will not be providing the information because it falls under an exemption.
  • That they don’t have the information you’ve asked for.
  • That the information falls under a “qualified exemption” and they need time to decide if releasing it would still be in the public interest. In this case, they can have up to 20 more working days to decide.

Note that an acknowledgement does not count as a response for the purpose of this time limit.

If an FOI request gets ignored, it’s quite likely that it’s just fallen through the cracks; the team handling these requests probably gets a lot of FOI requests, and might not be very large. If it’s been 20 working days, you should send them an e-mail reminding them that the time limit has elapsed. You can use a website like this one to calculate how many working days it’s been, accounting for bank holidays.

If the original request and your reminder don’t get a response, you should complain to the Information Commissioner’s Office.

If an FOI request gets refused this could be for two reasons:

  1. It falls under an absolute exemption, such as exceeding the cost limit.
  2. It falls under a qualified exemption, and the public body has determined that releasing the information is not in the public interest.

Public bodies should not refuse the whole request unless everything you have asked for is exempt. It’s quite likely that you will receive some of the information you have asked for even if an exemption applies. The most common exemption applied is cost: often the public body has the information but not in a searchable format, and collecting it for you would take too long. In this case, the public body should tell you what information may be available within the cost limit.

Generally, the best way to deal with a refused request is to make a new request asking a different question. For example:

  • If they don’t hold data on the average waiting time, you could ask for a maximum.
  • If the request is refused because searching through documents is too costly, you could narrow the search to a specific date range.

If you think an exemption is being misused in the response to your FOI request, you should respond as soon as possible asking for an internal review. If that fails, you can complain to the Information Commissioner’s Office.

For more information about your rights with FOI requests, see this guide on the Information Commissioner’s Office website.

Conclusion

Hopefully by now you’ll have a better idea of how to go about making Freedom of Information requests. In general, we want to avoid reinventing the work or duplicating effort, so keep your ear to the ground and talk to other people about what they’re doing. Keep in mind how you expect the data to be used, as this should inform exactly what sorts of questions you’ll need to ask. Ask yourself: are you mainly asking for activists or patients? What do UK trans people need to know?

Ultimately, we want to work towards a situation where we hardly need to make FOI requests at all. Requesting the same data from clinics every few months is unglamorous, tiresome, and generally unsustainable. Luckily, many clinics are moving towards making more and more of their information publicly available; a good example of this is the Leeds Gender Identity Service, who have published detailed information about the waits for each stage of their process on their website. Having a better dialogue with the more cooperative clinics is key here, as they can give us more insight into the right questions to ask. What’s more, the more information that these more cooperative clinics put out there, the more pressure there will be on other clinics to follow suit.

If you have any comments on FOI requests, or anything we’ve not covered that you think is worth mentioning, please don’t hesitate to get in touch. We’ll aim to update this article every so often based on our own experiences as well.