Blood tests for people with learning disabilities

Blood tests can be challenging for people with learning disabilities due to needle phobia or anxiety. Reasonable adjustments need to be made to make the process easier. This article discusses some management techniques.

This article is from In Focus September: The Ageing Issue.

Blood tests play an important part in supporting the health of people with learning disabilities. According to Public Health England (PHE) guidance, there are a number of findings from the Confidential Inquiry into the Deaths of People with Learning Disabilities (CIPOLD) that highlight the importance of timely blood tests for people with learning disabilities.¹

Problems with diagnosis and treatment were the most common reasons for premature deaths. Blood tests are often a vital part of diagnostic investigations and can support a treatment pathway.¹

“People with a learning disability largely have blood tests for the same reasons as people without a learning disability,” says Sophie Craven, a senior lecturer in learning disabilities nursing at Kingston University.

“However, we know that people with a learning disability experience more health needs than those without, so blood tests will likely be necessary more often.”

She says reasons include monitoring medication efficacy, safety, and side effects, pre/post-operatively, monitoring health needs and the efficacy of treatment, to find out if you have a specific health condition or are more likely to get a condition, and more specifically for people with a learning disability, as part of an annual health check.

Challenges of having blood tests

Blood tests can be “challenging for people with a learning disability if they have a fear of needles, pain, hospital/clinical environments, and/or of people in clinical uniforms”, says Ms Craven. This can be significantly exacerbated if the person has had a negative or traumatising experience in the past around blood tests or another clinical intervention, she says.

These fears are also often compounded by uncertainty or anticipatory fear if the person does not understand what is happening. “This might be because it hasn’t been explained to them, because the decision has been made that a blood test needs to happen quickly so there hasn’t been sufficient time to explain/process, or sometimes because the person has a level of learning disability that means it will be hard for them to understand ahead of time that they are going to have a blood test,” she says.

Other challenges are around resources, she says. “Clinicians can be reluctant to postpone blood tests on the day or take time over them because of the demands of getting other people seen and treated.

“Also, clinicians might not have the skills or resources to communicate with someone with a learning disability to help them understand what is happening if this hasn’t been done before the intervention.”

Other challenges can come from a lack of communication between and within services, she says.

“For most of us, we can rationalise that this is a short-term pain/discomfort that is for our long-term good,” says Jonathan Beebee, Royal College of Nursing professional lead for learning disability nursing. “Some, particularly those with more severe learning disabilities, may not be able to understand this. Imagine someone approaching you with a needle, and you don’t know why. They may not have the capacity to consent or withhold consent to this, and it may need to be done in their best interest, which still means trying to do it in a way that is most agreeable for them.

“Going to a strange environment, seeing nurses in uniforms, perhaps with Personal Protective Equipment, all the strange noises and activity that can go on in a clinic waiting area, and having fewer of the things around you that help you to feel safe can all make the procedure frightening,” he says.

How to manage/address these challenges

As to how to manage or address these challenges, “it will be different for each person so, as with everything, no one solution will work for everyone”, says Mr Beebee.

“I would strongly recommend seeing if a community learning disability nurse can be involved. They can support those undertaking the blood test to review the person’s capacity for this decision and make an individualised plan for making this as least distressing as possible.”

Adapted education could be planned for the person, including sharing easier-to-read information, watching videos, and discussing this with them in a way that meets their communication needs and improves their understanding of the intervention, he says.

It may also be helpful to rehearse coping skills with the person, helping them practice how to stay calm when they feel anxious, he says.

“Consider how to make the time at the clinic as relaxed as possible, for example, can their appointment be scheduled to avoid waiting, and can it be done at a quieter time of day? Are there things the person can take with them for comfort or a distraction?” says Mr Beebee.

Desensitisation programmes for blood tests

Many community learning disabilities services offer desensitisation programmes for people with a learning disability around blood tests. “These programmes can last as long as the individual needs, and allow the person to build up gradually to having a blood test in their own time,” says Ms Craven.

“They are centred on listening to the individual and stopping if the person asks to stop. This allows the person with a learning disability to feel in control of the process, and gives them confidence that they will also be listened to if/when they attempt a blood test for real.”

She says desensitisation programmes may involve augmented and alternative communication about having a blood test (a social story, a video, or role play), visiting a clinic where blood tests are carried out, looking at the equipment, and creating a collaborative plan for how the individual will manage fear/pain in a real blood test.

The plan could include things like topical anaesthetics and distraction techniques (a favourite show on an iPAD, a beloved book, music, reciting tube stations along each tube line), requests about the environment (a separate room if possible, dimmed lights if safe), and any other requests (please let me sit in the chair for 5 minutes before we start the blood test, I need to count down from 10 before the needle goes in).

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“The success of desensitisation programmes relies on their being sufficient time before a blood test needs to happen, and also on early identification of anxiety/fear around blood tests. It’s also vital that where a collaborative plan has been created this is shared with any healthcare professionals undertaking a blood test in the future,” says Ms Craven.

“Communication is key”, both with the person with a learning disability and with and amongst healthcare professionals, she says. “It may be that somebody who is fearful of blood tests is due to have a procedure which requires a general anaesthetic, in which case, with good communication it can be arranged that the blood test happens under anaesthesia.”

Any professionals who do not feel comfortable or confident should receive support from learning disabilities nurses within their services, including primary and acute learning disability liaison nurses. “These nurses can help support the individual and their family, make a plan for the intervention, and provide any communication resources that might be needed on the day. They can also offer staff education and support,” says Ms Craven.

Blood tests guidance

Guidance around blood tests for people with a learning disability comes from a variety of places including:

The Mental Capacity Act (2005): which outlines the processes that must be followed around consent. https://www.legislation.gov.uk/ukpga/2005/9/contents
The Equality Act (2010): which legislates that all health and social care services must make reasonable adjustments for people with a learning disability where practicable and possible. https://www.legislation.gov.uk/ukpga/2010/15/contents
Clinical holding: Each NHS Trust/service will have a clinical holding policy that outlines that the least restrictive option must always be used to keep someone safe.
Public Health England: Blood tests for people with learning disabilities: making reasonable adjustments. (2017)¹

The PHE guidance says that when someone with learning disabilities who is anxious about needles requires a blood test or an injection, “there should always be consideration of less invasive alternatives”.¹

The PHE guidance advises to “always find ways to avoid needles if possible – use a finger-prick test rather than venepuncture if this will be sufficient”.¹

And remember that “not everyone is worried about needles – the person should be asked neutrally if they are happy to have a blood test”, says the PHE guidance.

The guidance also recommends organising a local familiar place where people can go for blood tests when they need to – “this should involve the most skilled practitioner for taking blood”.¹

Building confidence

Desensitisation programmes “can take a long time and aren’t always completely successful in totally reducing fear and anxiety, but when they do work they can alter quality of life and interaction with health services immeasurably for the better”, says Ms Craven. Someone who is supported to have a positive interaction in a healthcare setting is then more likely to trust healthcare professionals and services in the future, and so any future health needs are more likely to be identified and met, she says.

“Unfortunately, there will always be times when it’s imperative for someone’s safety that they have a blood test without sufficient time to prepare them,” she says. “The main take home message should be that there is always something that can be done to make it slightly easier, however small.” That might be dimming lights, playing a favourite song, offering a countdown, or providing a visual timetable that lets the person know there will be a blood test later today, (this might not work for everyone, but will be helpful for others).

“These small things can feel really insignificant in the moment. But anything that can be done to give someone a slightly more positive experience, build trust and a therapeutic relationship, some autonomy/choice, or forewarning so that they can process and prepare will always be a good thing,” says Ms Craven.

“Whatever is attempted, the ultimate goal must be to prevent the individual from having a negative experience,” says Mr Beebee.

“If the person feels forced to do something they don’t want to, experiences extreme pain during the procedure, or senses that people are disappointed in them, they are unlikely to look forward to returning.

“Therefore, even if the visit is not entirely successful – for example, if blood was not successfully drawn – it remains important to make the person feel that their visit was a success,” he says.

“Look for what can be celebrated,” he says. “Isn’t it great that they managed to stay in the waiting room for two minutes, for instance? By building confidence and highlighting what went well, you increase the chances that they will come back tomorrow and try again.”

This article is taken from the September edition of LDT In Focus, which focuses on growing older with a learning disability

References

Public Health England (2017) Blood tests for people with learning disabilities: making reasonable adjustments – guidance. https://www.gov.uk/government/publications/blood-tests-and-people-with-learning-disabilities/blood-tests-for-people-with-learning-disabilities-making-reasonable-adjustments-guidance

Kathy Oxtoby

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Learning Disability Today