Giving blood samples
We know from enquiries to our Helpline that some children and adults with Down’s syndrome struggle with giving blood samples. Our recent blog about this issue really seemed to resonate with many families who were keen to feedback their positive and negative experiences. Needle phobia is common in the general population, so it stands to reason that people with Down’s syndrome should experience it too, particularly if they find it harder to understand why they need to go through the procedure and/or they have been put off by having a bad experience giving a blood sample in the past. A parent who called our Helpline neatly summed up the issue when she said ‘If you were not sure what was going on and someone tried to stick a needle in your arm, how would you feel?’’
We have put together some tips that may help children and adults have a better experience of giving blood samples. None of the tips and ideas here are new; they have been gathered from various sources including parents and health professionals. They have worked for some children and adults used in various combinations.
People struggle with the new and unfamiliar. Familiarising a person with what is going to happen can help to reduce anxiety and prepare them for giving a blood sample. The amount of preparation needed will be different from person to person; sometimes it’s a fine line between preparing a person to allay their worries and unintentionally creating anxiety because the forthcoming procedure is being blown out of proportion. There are lots of tools that people have found useful in helping someone to prepare for giving a blood sample; these include social stories, easy read information, photo books or videos.
There are some examples of easy read leaflets at the Easyhealth website
You can find an example of a social story about giving a blood sample here
Others may have their fears allayed by a trip to the doctor or hospital prior to blood being taken.
A man with Down’s syndrome needed to go the hospital for the first time to give a blood sample. His support worker talked to him about what was going to happen and then she arranged for him to have a trial visit to the hospital and to meet the doctor, the person who was going to take his blood sample. Whilst they were at the hospital they took some photos of the building. When they got home they made a story book using the photos as a reminder for the man about what to expect when he went to give a blood sample. They also used one of the photos on his visual timetable.
Many hospitals will have DVDs explaining what happens when a blood sample is taken. Find out if you can borrow a DVD from your local hospital. An example of a video about giving a blood sample (produced by Derby Teaching Hospitals NHS Foundation Trust) can be found on YouTube. Enter the following title in the search box: Having A Blood Test – Learning Disabilities Version.
For younger children it may help to rehearse what will happen with their favourite doll or teddy bear. You can bring the toy along to your child’s appointment so that they can go through the procedure first. This may provide your child with reassurance.
Rewards can work wonders. Remember to include rewards for getting through the procedure in any social stories, picture books or visual timetables that you use with the person who is giving a blood sample. Heaps of praise during and after blood is taken will help. If in doubt, resort to a bit of bribery.
Finding the right location
For many people an unfamiliar and noisy clinical environment can be overwhelming even if they have had a prior visit. Blood taking does not always have to happen in a clinical environment. Some families arrange for a community nurse to take a blood sample at home, at school or at the local children’s centre. Find out if there are alternative settings where a person can have a blood sample taken. One Consultant took an adult with Down’s syndrome into his office and took the blood sample there. He got the sample first time and the man barely moved.
Who should I ask to take the blood sample?
Although all staff qualified to take blood should be able to manage the person giving blood sensitively and calmly, some parents and support workers have found that they have had a better experience with particular professionals (e.g. a phlebotomist, a senior nurse or a learning disability nurse).
Finger Prick Test
It is possible to carry out limited thyroid testing using a few drops of finger prick blood instead of a larger amount from a vein. If this screening method is used it should be repeated every year. Further information about finger prick testing for thyroid can be found in the DSA’s booklet about thyroid disorder (hard copy available on request).
Positioning and distractions
Positioning and distractions can make the process easier for children and adults. The right position can help them feel safe and secure, make it easier to distract them (e.g. if they are looking at you rather than at the person about to take blood) and can lessen the likelihood of the person taking blood getting hit by a flailing arm or leg.
Providing a distraction during blood taking may help to reduce anxiety (e.g. an iPad, favourite toy or game, iPod and headphones, an activity book involving having to find objects, singing, engage the person in a conversation about something they are passionate about.)
Local anaesthetics (e.g. creams such as ‘Emla’ cream) can be used to numb the skin and reduce pain before blood is taken. Ethyl chloride is an alternative to anaesthetic cream; it acts as local pain relief when sprayed onto the skin. It has no anaesthetic properties, but rather works as a vapo-coolant. A thin film of liquid is sprayed onto the skin, which makes the skin cold and less sensitive as the liquid evaporates.
Who Can Help?
Some families arrange for the Community Nurse to visit their child at school to carry out a desensitisation programme. Other parents have found the services of a play worker or play therapist useful. Talk to your local hospital or GP about this. A play worker can visit your child at home and go through the process of giving a blood sample with them. Your local Community Learning Disability Team (CLDT) can be a good source of advice. CLDTs usually have clinical psychologists and Learning Disability Nurses who can work with adults with learning disabilities around needle phobia.
Can the blood taking be combined with another procedure to make it less stressful?
If a person is having an operation, ask the anaesthetist at the pre-op session about the possibility of taking a blood sample whilst they are anaesthetised.
A Final Note
These tips may help someone you care for or support to find it easier to give blood samples. They are not a magic wand that can be waved with instant success. For some people, just getting them to a point where they feel comfortable with the setting and staff, where blood may eventually be taken, can be a lengthy process in itself. This is before you even reach the stage of the person being happy to undergo the full procedure, if ever. Realistically speaking, we know there are going to be some children and adults who will always struggle with giving blood whatever measures are put in place to help them.