Informed consent for blood tests in people with a learning disability

ORIGINAL RESEARCH

Informed consent for blood tests in people with a learning disability

Lesley Goldsmith, Val Woodward, Leigh Jackson & Heather Skirton

Accepted for publication 27 October 2012

Correspondence to L. Goldsmith:

e-mail: [email protected]

Lesley Goldsmith PhD

Research Fellow

Faculty of Health, Education and Society,

Plymouth University, Devon, UK

Val Woodward PhD RGN

Lecturer, Adult Community Nursing



Leigh Jackson BSc

Research Fellow



Heather Skirton PhD RGN RM

Professor of Applied Health Genetics



GOLDSMITH L . , WOODWARD V . , JACKSON L . & SK IRTON H . ( 2 0 1 3 )

Informed consent for blood tests in people with a learning disability. Journal of

Advanced Nursing 69(9), 1966–1976. doi: 10.1111/jan.12057

AbstractAim. This article is a report of a study of informed consent in people with a

learning disability. The aims of the study were to explore the information needs

of people with mild-to-moderate learning disabilities with respect to consent for

blood tests and to identify ways of facilitating informed consent.

Background. The recent political agenda for social change in the UK has

emphasized the right of people with a learning disability to have more autonomy

and make their own decisions. As in other countries, there has also been a shift

towards shared decision-making in healthcare practice.

Design. Qualitative study using an ethnographic approach.

Methods. An ethnographic approach was used for this qualitative study. Phase 1

involved observation of six participants with a learning disability having a routine

blood test in general practice, followed by semi-structured interviews with 14

participants with a learning disability in Phase 2. Data were collected between

February 2009–February 2010.

Findings. The data showed that consent procedures were often inadequate and

provision of information to patients prior to a blood test was variable. People

with a learning disability expressed clearly their information requirements when

having a routine blood test; this included not wanting any information in some

cases.

Conclusions. Healthcare practitioners and people with a learning disability need

to be familiar with current consent law in their own country to facilitate valid

consent in the healthcare context. This study demonstrated the value of

qualitative research in exploring the knowledge and attitudes of people with

learning disability.

Keywords: consent, ethnography, learning disability, mental capacity, nursing,

primary care

1966 © 2012 Blackwell Publishing Ltd

JAN JOURNAL OF ADVANCED NURSING

Introduction

Rapid advances in the field of health genetics in recent

decades have led to the application of genomics in main-

stream health care (National Institute of Health 2012). For

example, pharmacogenomic tests may be used to guide drug

choice and dosage for an individual (Gage & Lesco 2007).

People with a learning disability (LD) are at the same risk

of common conditions as others in the general population

and may be offered genomic tests as part of their routine

health care. However, because these genomic tests are not

widely available in a clinical context in the UK, this was a

preparatory study exploring current consent practice for a

routine blood test.

There are three international criteria that define a LD:

intellectual impairment, social or adaptive dysfunction

combined with impairment, and early onset (British Insti-

tute of Learning Disabilities 2011). Terminology, however,

varies internationally; for example, the term ‘intellectual

disability’ is used widely in Australasia and the USQ.

Informed consent, both in the UK and the USA, has evolved

from case law and is based on the following elements:

information, understanding, lack of coercion, capacity,

and decision (del Carmen & Joffe 2005). Although there

may be individual variations, countries in Europe are

likely to base their consent practice on a document pub-

lished by the Council of Europe (1997), based on human

rights.

Obtaining informed consent is a requirement of any

healthcare intervention and this requires an assessment of

capacity; however, cultural differences may dictate consent

procedures in each country (del Carmen & Joffe 2005).

The context for this study was health care offered through

the publicly funded National Health Service (NHS) in the

UK. The functional approach to assessment of capacity

adopted by The UK Mental Capacity Act (2005) broadly

reflects the work of Appelbaum and Grisso (1988) and

Grisso and Appelbaum (1998) in the USA. This approach

involves assessment of three criteria – the ability to under-

stand information relevant to the decision, to retain that

information, and to weigh it up in the process of making a

choice.

Background

The conceptual framework of this study related to empow-

erment, shared decision-making and role theory. Empower-

ing people with LD is a complex issue involving various

stakeholders such as parents, carers, and health profession-

als, and conflicts may arise because of their differing views

and approaches. The UK government published ‘Our

Health, our care, our say’, aiming to give people more voice

in improving health services, but a later progress report

contains no mention of people with LD (Department of

Health 2006, 2007).

There has been a policy shift towards shared decision-

making in the UK (General Medical Council 2008), but

this transition may not be easy for health professionals

(Elwyn et al. 2000). Coulter et al. (1999) considered that

acceptance of shared decision-making may not be

straightforward for patients either. While two UK studies

indicated that many people with LD are not involved in

decisions about their own health (Fovargue et al. 2000,

Myron et al. 2008), Myron et al. (2008) concluded that

knowledge of mental capacity amongst health and social

care staff was inconsistent and that service users wanted

to be involved and supported to make their own deci-

sions.

Historically, health professionals and social welfare staff

have had a powerful role, whereas people with LD have

been unlikely to make their own decisions (Fovargue et al.

2000). Biddle (1986), in his seminal work on role theory,

suggested that role can be related to expectations, social

position, and context; in particular, roles can be associated

with people who share a common identity. It may, there-

fore, be difficult for both a person with LD and a health

professional to adapt to the changing roles imposed by

organizational policies.

Evidence from a systematic review (Goldsmith et al.

2008) indicated a need for research on consent in people

with LD in a ‘real life’ context. By using a focused

ethnographic approach (Muecke 1994, Roper & Shapira

2000) to obtain the attitudes and experiences of people

with LD in the context of their health care, we aimed to

identify current practice with regard to consent and to

elicit ways of maximizing informed decision-making by

people with LD.

The study

Aims

The aim of the study was to examine the ways in which

informed consent for routine blood tests was obtained from

people with a learning disability.

Design

For this qualitative study, we used an ethnographic

approach (Hammersley & Atkinson 2007). Focused

© 2012 Blackwell Publishing Ltd 1967

JAN: ORIGINAL RESEARCH Informed consent for blood tests in people with a learning disability

ethnography (Roper & Shapira 2000) has a shorter time-

scale than traditional ethnographies, focuses on a specific

problem in a particular context, and the knowledge

learned is expected to have a practical application for

health professionals.

Participants

As participants were members of a vulnerable group, we

recruited via gatekeepers, including LD nurses, care work-

ers, support staff working in the community, and general

practice. Gatekeepers were given study information (includ-

ing inclusion and exclusion criteria) and they nominated

potential participants.

People with LD were eligible for this study if they were

aged 18 years or over, able to consent to participate in

research, not affected by acute physical health problems,

and not currently under the care of the local mental health

team. The final inclusion criterion was the requirement

for a routine blood test (e.g. for monitoring blood sugar

control) within a few months of recruitment. We used

purposive sampling, aiming for a maximum variation

sample in terms of residential status, age and ability (Patton

2002).

Participants’ age ranged from 27–65 (mean 45). Half

(50%) lived in a shared house (supported living), with the

remainder either living at home with parents, living

independently with support, or living along with informal

family support. Twelve of the 14 participants were single.

Data collection

Observation data (Phase 1) were collected between Febru-

ary–December 2009; the researcher was an observer during

participants’ attendance for a routine blood test at a general

practitioner surgery. Each participant was observed having

one blood test, the observation period ranged from 3–

6 minutes. One semi-structured interview (Phase 2) was

conducted with each participant between April 2009–Febru-

ary 2010; these lasted between 12 and 35 minutes. Consul-

tations and interviews were video- and audio-recorded to

ensure accurate transcription and enable observation of

non-verbal behaviour.

Ethical considerations

The study was approved by a local NHS Research Ethics

Committee. Study materials for participants with LD were

in an accessible format. Following the methods used by

Young and Chesson (2007), participants were asked to

choose a ‘supporter’ to accompany them to meetings

arranged specifically to obtain consent. By prior agreement,

these meetings were video-recorded to provide a record of

any non-verbal cues that may have contradicted or

supported verbal or written consent given. Supporters

were given information regarding consent and a study

information sheet and were asked to assess whether consent

had been freely given or withheld and the participant had

capacity to make the decision. As a final safeguard, infor-

mation was re-iterated and consent confirmed with the

participant immediately prior to observation or interview.

All health professionals involved in the consultations,

together with the participants’ supporters or carers, gave

informed consent to be video-recorded.

Data analysis

Interview data were transcribed verbatim. There was identi-

fication of codes based on the original transcripts; these

were then grouped into categories and themes and analysed

thematically using methods described by Braun and Clarke

(2006). Data analysis was approached in an inductive way,

considered appropriate for an exploratory, descriptive

study. Observations of consultations were video-recorded

and supplemented by note-taking. NVivo 8 (QSR Interna-

tional 2008) specialist software was used to record and

store data for coding. The visual data were used to identify

behavioural cues and check any incongruence between

speech and expression.

Rigour

Data were transcribed by one researcher (LG). Independent

coding of several transcripts was carried out by two

experienced researchers to maximize trustworthiness.

Reflexive notes were made, as a key element in ethno-

graphic research is a certain level of self-awareness by the

researcher (Hammersley & Atkinson 2007).

Findings

Demographics of the participants

All participants from phase 1 (n = 6) were due to have blood

tests as part of their routine medical care. All six participants

were well known to the health professionals who performed

the blood test. Health professionals included phlebotomists,

healthcare assistants and registered general nurses. In

Phase 2, participants were interviewed (n = 14); six of these

had been observed in Phase 1. In the consultations, some


L. Goldsmith et al.

participants (n = 2) were supported; in the interview phase,

all participants were offered the opportunity to bring a

supporter and ten did so. We identified six key themes;

the patient in the healthcare context, information and

knowledge, the consent process, behavioural characteristics,

strategies and coping mechanisms, and ‘the self’.

The patient in the healthcare context

This theme relates to how the participants saw themselves

in relation to their healthcare team, how they felt about

going to see the doctor, about having blood tests and about

their relationship and communication with the healthcare

team. Consultations often started with social chat, some-

times leading to explanation of the procedure and/or the

reason for the blood test. This, in some cases, signalled the

start of the consent process. Some were brief and ‘business-

like’, with no preliminary chat. Due to the participants’

LD, their responses to questions were often brief, with little

substance to the conversation:

Health professional (HP)

So, we’re gonna take some bloods from you this morning,

E. Is that all right?

E Yes, it is, yes.

Some conversations were informal, with the patient

relaying their news to the nurse:

HP So you’re moving into a new place?

A Yes, I’m waiting, yeah

HP Yeah, so have you got a date yet to go, or not?

A No, no, nothing’s happening

After further discussion, the nurse asks if the patient

knows why she is there:

A Yeah, for my blood test.

Conversations often involved humour. In one case, prior

to the nurse trying to find a good vein, the participant

joked and the nurse responded:

D I get the point (laughs at own joke) (both laugh).

HP You’re on form today, aren’t you (both laugh

again).

For many, the experience of going to the doctors’ was

routine and held no fear for them:

Researcher (R)

but can you tell me a bit about how you feel when you go

to the doctors or the hospital to have, to have a blood test?

C I’m so used to it now. I’ve had it for ages. Cos

I’ve got thyroid trouble and they do it every so

often.

Some participants, despite admitting a dislike of needles,

acknowledged that it was something they had to accept as

part of staying well. Some expressed strong views about

their health care and appeared unwilling to tolerate a poor

level of care:

C Well, when I went to one place and um he said

‘Well, what are you here for?’ I thought crikey,

that’s not a very, thing, you don’t ask, say that

to somebody, do you? So I moved doctors’

surgery then.

In general, there was a good deal of trust in health

professionals:

B Whether or not it be a blood test or whatever

and you want to make yourself better, don’t you?

This is the main thing, so I think, I don’t mind

going, Cos it’s your health they’re dealing with,

innit?

Finally, the role of the support worker or carer was clari-

fied by some participants:

C If I, I would take my carer with me, because she

knows and understands and then she would sort

of talk to me afterwards and explain.

Some participants who attended the surgery indepen-

dently explained that communication was not always easy

and made suggestions to alleviate this:

R How do you find it at the doctors? Do you

understand everything that they are saying to

you?

I Um, I find a little bit difficult cos I have to say

to the doctor, ‘Can you repeat that please?’ But

yeah, they say it again, I understand that and

they are really good, my doctors.

Information and knowledge

The amount of information imparted was variable. In some

cases, healthcare professionals attempted to establish the

patient’s level of understanding; for example, did patients

know why they had come to see the nurse or why the blood

test was advisable? One participant objected to the cuff

being inflated by the nurse; an explanation as to why this

was necessary was not given. In contrast, another nurse

who had problems finding a vein explained this procedure



as she went along. The patient was sighing loudly, seem-

ingly losing patience with the process:

HP Mmm, right. I’m gonna put my blood pressure

cuff on, cos that’s not coming up very well.

A Sorry (smiles)

HP It’s not your [transcriber’s emphasis] fault, is it?

Obviously knew you were coming in here today,

so they’re hiding. This’ll just give them a bit more

pressure on there, make the veins come up better.

Information, if any, given during the blood test consulta-

tions was verbal, and there were no examples of any alterna-

tive presentation such as a leaflet in accessible format. Some

participants did not appear to understand why they had

had a blood test; some guessed, although others clearly

understood:

R So do you know what, the blood tests that you

had on… on…um - when I saw you…Do you

know what those blood tests were for? Do you..?

B They’re for, they’re for diabetes. And to see

(pause), to see, you know, like your tablets, to

see about, if, or else if I need to be increased the

tablets, else if I need to go on the insulin, you

know. And that, this is it, yeah. This is what the

review will be about Thursday.

The way information is presented is important and

communication is seen as a problem:

R So what is it about the way, about the way that

doctors explain things that is difficult for a lot of

people, do you think?

C The sort of long words they use sometimes…..cos

some people can’t, you know, don’t know what

they’re saying, talking about.

Participants were clear about their information requirements:

H I can’t see when they’re little [font size], I like it

when they are big. I can read then, but not long

words.

R They need to tell you what it’s for?

A Yeah..And explain to me… S l o w l y, [not]

(gesticulates) [Not] in a load of jargon.

The consent process

One of the essential criteria for valid consent is provision

of relevant information in an accessible format (Ministry of

Justice 2007). The amount of information provided for

participants prior to obtaining consent for taking blood

ranged from none to a detailed description of the reasons

for the blood test. In some cases, consent appeared to be

sought for the procedure rather than for testing of the

blood sample. Some healthcare professionals, however, gave

a detailed description:

HP Do you know why you are here today?

A Yeah, for my blood test. Cos I was, I was ill

HP Yes, but the one that we’re taking is to check

your thyroxin levels

Sometimes, both elements (procedure and purpose) were

mentioned and the patient indicated understanding using

non-verbal communication:

HP So, we’re gonna take some bloods this morning

HP If that’s alright?

D Yeah, yeah

HP Now, we’ll check your kidney function and your

[liver]

D [Yeah] (pats his upper abdomen in the region of

his liver, indicating understanding)

In some consultations, there appeared to be little or no

explicit attempt to obtain consent from the patient:

HP Arm nice and straight for me now please F. Only

two bottles.

F Oh that’s alright then (grunts)

In the case of A, who was given a full explanation of

the reasons for the blood test, there was a clear request for

consent:

HP Yeah, it’s to make sure that the level is still

staying OK, because at the moment your levels

are alright so you don’t actually need the

medication, but that could change, so they’ll

probably check it, I think at the moment it’s

going to be every six months (A listens intently

to the explanation)

A Yeah

HP until they get a pattern and see whether it stays

level and if it stays ok, it will be every year for

them to do the level. Is that alright?

The nurse then prepared for the procedure, but the

patient raised an objection:


L. Goldsmith et al.

A You’re going to dead it first, aren’t you?

HP No

A (shouts) Don’t!

HP Don’t what? (gently)

A Going to deaden it first?

HP You can’t deaden it before you do this, love.

Only just one sharp scratch and that’s it – and

that’s all you’ll feel. Is that alright?

A Yeah, I’ll try

The responses from participants when expressing consent

were fairly minimal, and it was difficult as an observer to

judge whether they were genuinely giving their informed

consent.

For example:

F That’s alright, love, just carry on. Carry on

nursie.

To summarize, there was a range of ways the healthcare

professionals approached the blood test and inconsistency

in the level of information giving and seeking of consent.

Behavioural characteristics

Participants exhibited behavioural cues as well as verbal

expressions, before and after the procedure. One participant

appeared anxious while awaiting the test, with tense facial

muscles, increased respiratory rate with legs constantly

jogging up and down. His anxiety continued following the

drawing of blood and he expressed concerns about possible

after-effects:

HP You OK?

D Mmm. Will I have to sit down for a minute, will

I have to take a rest cos I have had some blood

taken out? (seems anxious again)

HP Well, no, it’s a very small amount, you’ll be fine.

The ways health professionals provided support for

anxiety such as this are discussed in a later theme.

Despite anxiety, there was much evidence of bravado prior

to and during the procedure. Eventually, participants

appeared to resign themselves to having the procedure,

despite their apprehension. This acceptance was often

combined with the use of humour. Expressions such as ‘Just

stick it in there’ (F) and ‘Just stick the needle in and do it’ (A)

illustrate both acceptance of the situation and an element of

‘putting on a brave face’.

Some participants expressed token resistance to the pro-

cedure. Some appeared to find inflation of a sphygmoma-

nometer cuff as painful as drawing of blood. Others

experienced pain during the procedure – illustrated mainly

by their facial expressions and sighs and gasps, or simply

‘Ow!’ (A) or comments such as ‘Don’t’ (F, A), although

they did not seem to be intended as literal commands,

simply as objections. This is, however, required interpreta-

tion by the healthcare professional. F specifically expressed

relief that the procedure was over:

HP All done. Needle out, all finished

F Oh, thank God for that. Phew (whistles)

These characteristics illustrate the complex problems that

can occur when considering capacity and consent. Health-

care professionals must be aware of these behaviours and

react to them, which is the subject of our final theme.

Strategies and coping mechanisms

Throughout the consultations, there were various strategies

used by both patients and health staff to deal with apparent

nervousness and apprehension. In the case of A, who

wanted a local anaesthetic, the nurse dealt with this by

repeated, gentle reassurance. Another way to help the

patient relax was to involve them in the procedure itself.

One nurse, while having a problem finding a vein,

explained how she did it:

D How do you know which vein it is?

HP By feeling. You have a good feel around

D I don’t know which one – that one, is it?

HP Yeah, that one feels better than the other – feel

that?

Most participants were well known to the nurses taking the

blood and as mentioned above humour often featured in

their meetings:

HP Almost there, I won’t take it all, I promise

(laughs)

E That’s ok.

HP I’ll leave you with some.

E Oh, good! (both laugh)

Various methods of distraction were used by healthcare

professionals. One asked the patient to look at photos of

the doctor’s family on the notice board:

HP I’ve got nothing brilliant for you to look at, but



B No

HP You could look at – that’s Dr X and his wife and

his children

Sometimes patients needed reassurance that they were

not going to come to harm, or that they were doing well:

F (Pulls face.) Wait till I see the needle, I kinda

flinches. Hate the bloody things.

HP Actually you are good at this

During the procedure, there were constant checks to ensure

that patients were ‘all right’, even if they had exhibited no

signs of anxiety or pain:

HP There we go. Little sharp sting there, OK? Well

done. There we are, I’ll just loosen that one off.

Alright?

E Yes, thank you, I am.

Strategies were not only used by the healthcare profession-

als, but also by the patients themselves in an attempt to

make light of their concerns. Even in the briefest consulta-

tion, the use of humour by both nurse and patient produc-

ing laughter from both parties reinforced the rapport in

their relationship.

In Phase 2, participants had the opportunity to talk

about themselves and a new theme – that of ‘The Self’,

comprising self-identity, self-image, and self-determination

was identified.

‘The self’

There was a tendency for some participants to try and

impress with their reading ability, their level of indepen-

dence and general capabilities; dismissing others who were

less able:

C I don’t like pictures very much, because I can

[transcriber’s emphasis]read. You know, I know

people that can’t read, then you’ve got to have

pictures. I think it’s a bit babyish (pulls a face), I

think.

R Do you think you need to be brave to go the

doctor’s?

A No. I’m not like the rest of them that need

support worker … If I need to go to the

doctors….. They want their support worker to go

with them all the time. I’m not like that

(scratches head, looks emotional) I just go on my

own. I’m not a baby, I’m an adult (shrugs)

Many were keen to express how they wanted to be trea-

ted:

C Yes, not like children.

R And that makes going to the doctors easier?

C Yes, cos you’re just like anybody else, then.

These themes, identified from both phases, are summarized

in Table 1.

Discussion

The first thing to note is that the consent process did not

appear to be fully followed in any of the consultations

Table 1 Themes from Phase 1 (Observation) and Phase 2 (Inter-

views).

Theme Sub-theme

Phase 1

(Observations)

Phase 2

(Interviews)

Patient in

healthcare

context

Attitude to having

a blood test

✓ ✓

Feeling about going

to the doctors

✓

Knowledge of

healthcare system

✓

Relationship and

communication

with the healthcare

professional

✓ ✓

Role of supporter ✓

Information

and

knowledge

Presentation of

health information

✓ ✓

Knowledge of blood

tests in general

✓

Purpose of blood

test and procedure

✓ ✓

Consent Seeking consent ✓

Expressing consent ✓

Behavioural Anxiety ✓ ✓

Bravado ✓ ✓

Fear ✓ ✓

Pain ✓

Relief ✓

Resistance ✓

Strategies and

coping

mechanisms

Distraction tactics ✓ ✓

Establishing rapport ✓

Reassurance ✓

Use of humour

or teasing

✓

The self Self-identity ✓

Self-image ✓

How I would like

to be treated

✓

Decision-making ✓


L. Goldsmith et al.

observed in Phase 1. In some cases, adequate information

was provided. However, in the majority of cases, the

health professional did not check that the participant

understood the information given; this is an essential

requirement for informed consent. Personal qualities and

experiences may influence the consent process; factors such

as a person’s place of residence (Dean et al. 1998, Fisher

et al. 2006), previous health experience (Cea & Fisher

2003), and opportunities to make their own life choices

(Arscott et al. 1999) all contribute to the individual’s

ability to consent to healthcare interventions. In all cases,

participants were known to the health professional and

they were ‘experienced’ patients. This may have led the

health professionals to make assumptions concerning con-

sent. These assumptions would not be sufficient to fulfil

the requirements of the Mental Capacity Act (2005), as it

is the responsibility of the person carrying out the proce-

dure to ensure that valid consent is in place at the time

and this should include provision of relevant information.

This is particularly important in the case of people with

LD, who may not have the cognitive ability to retain infor-

mation given previously. Any information given was brief

and we saw few attempts to confirm that there was under-

standing. It is possible that acquiescence, known to affect

the consent process (Clare & Gudjonsson 1993, Heal &

Sigelman 1995), played a part and this was evidenced in

the interviews. The code of practice for the UK Mental

Capacity Act states that ‘every adult has the right to make

their own decisions if they have the capacity to do so’

(Ministry of Justice 2007, p19) and also that a simple,

broad explanation containing essential information about

the decision to be made is sufficient. Our interview findings

showed that many people with LD did not wish to have

information about a blood test, but were happy to allow

the healthcare professional to make decisions for them.

This demonstrates some degree of autonomy on the part of

the participant and may also be seen in people without a

LD (Pho 2011).

Although the consent obtained in some cases did not

appear to be fully informed, the patients were clearly

assenting to the procedure. During the procedure, the

healthcare staff made every effort to ensure the comfort of

the patient and minimize any anxiety. Although detailed

information was often not forthcoming, there was some-

times an explanation afterwards of the purpose and impli-

cations of the blood test.

To conclude, a picture emerges of people with LD being

satisfied with the care they receive when they have a blood

test, having trust in their healthcare team and requesting

support should they feel they need it.

The understanding and needs of people with learning

disability with regard to having a blood test

Participants clearly expressed their information needs with

regard to their health care; they required clear, accessible

information, with any verbal explanations being simple and

without jargon. Their comments reinforced recommenda-

tions made by organizations providing advice on accessible

information (Mencap 2002, Social Care Institute for Excel-

lence 2005). People with LD are often not given sufficient

information to make health decisions (Keywood et al.

1999). However, the reasons for this are complex and the

authors described certain misconceptions held by people

with LD: that family members have the right to consent on

their behalf or that health workers can impose unwanted

treatment on a patient. People with LD who are accus-

tomed to having decisions made for them may not be aware

of their rights in relation to provision of information before

giving consent. Our data also reinforce findings from the

literature about the nature of information, which should be

provided for people with LD: that capacity is maximized

when information is broken down into simple elements

(Wong et al. 2000) or with brief sentences and simple,

concrete terms (Fisher et al. 2006).

Relating the findings to theory

The lives of people with LD are being influenced by legisla-

tion designed to give them more say in the way they live;

providers of social care are being given guidance to make

their care ‘person-centred’ and to facilitate higher levels of

independence in the people they support (Department of

Health 2010a,b). The empowering that is implied in such

documents is policy driven, not issuing from the people

who are seen as disempowered. In other words, this power

is being given, not taken.

These developments are likely to disturb established

dynamics within relationships. For example, establishing a

greater level of independence for the person with an LD

will inevitably change the balance of power in the relation-

ship between ‘supporter’ and ‘supported’. Someone who

has lived their whole life deprived of personal choices may

find it difficult to accept this new responsibility.

From the literature on organizational role transitions,

comes the view that when someone’s role changes, they

need to be familiar with their new role to feel comfortable

and perform well (Ashforth 2001). This principle could be

applied to the healthcare professionals’ new role of ‘shared

decision-maker’ and that of the person with LD with a

newly developed role in decision-making. Each is adopting



a subtly different ‘role’ in the healthcare system and the

findings from this study show that the transition is not nec-

essarily successful.

How different is a person with a learning disability?

One important issue we reflected on was whether the situa-

tions observed would differ for patients without LD. Some

of the participants were quite clear that they wanted to ‘be

normal’ and considered themselves as such in this context.

Is the apparent vulnerability of a population the important

issue here? The Mental Capacity Act (2005) should be

applied to everyone whose capacity is in doubt and infor-

mation should be in an accessible format for anyone who

would have difficulty understanding it in a regular format.

In summary, we conclude that in the context of consent to

a routine blood test, people with mild-to-moderate LD

appear to have similar needs to people without LD, with

the potential need for extra support to achieve optimum

communication and understanding to facilitate informed

consent.

Limitations

This study has limitations. First, participants with severe or

profound LD were excluded, and this limits the transfer-

ability of the findings. Secondly, it is possible that suitable

participants were excluded due to judgements made by

gatekeepers. To achieve a maximum variation sample, it

would have been useful to recruit more young participants

and those living at home with family. In addition, we did

not witness any participants declining a blood test and that

may be an area for further study.

However, we consider that a strength of this study was

the fact that people with LD themselves were active partici-

pants. This is consistent with the trend towards participa-

tory research outlined by Grant and Ramcharan (2007).

Conclusions

In this study, we observed current practice in obtaining

consent for a blood test for a person with LD in general

practice, and explored the information requirements of peo-

ple with LD prior to consenting. It was clear from our find-

ings that application of the MCA (2005) was inconsistent

in healthcare professionals. General Practitioners and their

staff have a small number of patients with LD, and it may

be the case that the information provided during Mental

Capacity Act training is not retained (despite relating to all

patients). In the case of blood tests, the consent process

may not be considered relevant, as patients without LD

imply consent by their presence in the consulting room. We

would like to stress the importance of valid consent being

in place for any clinical procedure and thus the requirement

for primary care staff to be fully cognisant of its implica-

tions in the case of people with LD.

It is essential that people with LD are made aware of

their right to be given information in an accessible format,

to make decisions for themselves with appropriate support

and to say ‘No’. Information should be provided in a for-

mat appropriate to each individual, ideally in advance as

well as at the time of procedure, allowing the patient time

to digest it at their own pace, with support if necessary.

This should also reassure the healthcare practitioner that

the patient has good understanding of the implications of

consent. This study highlights the need for further research

What is already known about the topic

● It is acknowledged that people with a learning disabil-

ity may be vulnerable to abuse of the consent process,

depending on the context and complexity of the deci-

sion.

● Limited knowledge of learning disability and poor

communication skills have contributed to the inequal-

ity of access to health care experienced by some people

with a learning disability.

What this paper adds

● There is inconsistent knowledge of the United King-

dom Mental Capacity Act amongst health profession-

als, resulting in lack of clarity about the rights of

people with a learning disability.

● People with a learning disability have opinions about

their health care and are willing to express their pref-

erences and needs for support.

● People with a learning disability have limited aware-

ness of their right to make their own choices and give

or withhold consent to health procedures.

Implications for practice and/or policy

● Health professionals working in primary care should

receive appropriate education on mental capacity and

the consent process

● Health information should be tailored to the needs of

the individual to enable the individual with a learning

disability to make his or her own decisions when

appropriate


L. Goldsmith et al.

to ensure that people with LD have equitable access to

genomic health care in the future.

Acknowledgements

The authors thank Professor Christine Webb for her

support in designing the study and Anita O’Connor for

proofreading the manuscript.

Funding

This research received no specific grant from any funding

agency in the public, commercial, or not-for-profit sectors.

Conflict of interest

No conflict of interest has been declared by the authors.

Author contributions

All authors meet at least one of the following criteria

(recommended by the ICMJE: http://www.icmje.org/ethi-

cal_1author.html) and have agreed on the final version:

● substantial contributions to conception and design,

acquisition of data, or analysis and interpretation of

data;

● drafting the article or revising it critically for important

intellectual content.

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