Paul Astley
August 2016
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License.
Please contact Healthwatch Stoke if you have paid for a copy of this report.

Contact – Paul.Astley@HealthwatchStoke.co.uk
1
The author’s intention is to share the learning gathered as part of this work solely to improve service user experience.
Therefore, it is intended to be public and the authors are determined to preserve free access to it.
To protect our rights this paper has been published under a Creative Commons Attribution-Share Alike 4.0 International
License. This means that the data and report can be shared and this should be without a charge. Please contact us if
you have paid for access.
(https://creativecommons.org/) –
Contents
Methodology............................................................................................. 2
Summary................................................................................................. 2
Recommendations...................................................................................... 2
Introduction. ............................................................................................ 3
Social Determinants of Health – Analysis............................................................ 4
Narrative - Courtesy Stigma & Mental Health Literacy ........................................... 5
Our Participants...................................................................................... 6
Health Information Seeking ........................................................................ 9
Other Points Parents Made...........................................................................12
Advice from Parents for Parents ....................................................................12
Appendix................................................................................................13
Autism Journey – Case Study ......................................................................13
This report has been produced in partnership between Healthwatch
Stoke-on-Trent and Scope Face 2 Face.
Many thanks to all the people who contributed by agreeing to be
interviewed or attended events.

Contact – Paul.Astley@HealthwatchStoke.co.uk
2
This document explores the extent to which waiting for mental health services impacts
upon the social determinants of mental health in parents. All four of the parents which
contributed (and one child) are users of a service called Scope Face 2 Face1
which enables
parent/carer peer support. They are parents of children with behavioural disorders and
autism. They each had semi-structured interviews with a Healthwatch Stoke-on-Trent
member of staff. These interviews were then analysed to understand how their stories
interact with the social determinants of Mental health. Blue text in the document denotes
interview extracts.
This report finds that waiting for mental health services does impact upon the
determinants for mental health in parents. It finds that although attitudes to mental
health have improved, parents of children still feel stigmatised. Low levels of Mental
Health Literacy and therefore understanding of conditions enable an environment where a
multitude of opinions about causation proliferate. Because of this, parents find they have
to navigate a barrage of perspectives from various sources including teaching professionals
and family, some of them attributing blame to themselves, thus driving feelings of guilt
and responsibility. This can lead to erosion of the social determinants of health through
feelings of isolation or indeed, may encourage them to isolate themselves.
It is found that participants experienced diagnosis as a barrier to the help that addressed
their needs. This help is described as advice regarding self-help and signposting which
perhaps could be delivered without diagnosis. In order to overcome this, parents describe
using the internet for help and advice, in particular forums although these were found to
be of variable quality. All of these things impact upon the Social Determinants of Mental
Health.
 Support self-help without requiring a diagnosis (allow autonomy);
 Significant investment in Mental Health Literacy for all (reduce stigma);
 More holistic, family focussed delivery.
1
http://www.scope.org.uk/support/services/befriending/about-face-2-face

Contact – Paul.Astley@HealthwatchStoke.co.uk
3
This section illustrates the mechanism by which waiting for mental health services for
young people impacts upon themselves as well as those around them. What is clear is that
there could be an impact upon the wellbeing of carers and subsequent ability to cope with
the demands of their role. In order to maintain their own wellbeing, both children and
those around them are dependent upon the social determinants of mental health (below).
A long wait for services erodes the determinants, leading to increased potential for
decreasing wellbeing, maybe ill health and a possible cycle of depreciation. This report
investigates how this works through combining the outcome of interviews with service
users and secondary research. Firstly, it examines the stigma, why and how it affects
parents. Then it moves on to explore how parents cope with the situation they find
themselves in through seeking self-help, describing the barriers to this.

Contact – Paul.Astley@HealthwatchStoke.co.uk
4
Although the cohort interviewed was small, it is still possible to construct the below table
which illustrates how the social determinants of mental health could be affected.
2
https://www.vichealth.vic.gov.au/media-and-resources/publications/a-plan-for-action-2005-to-
2007
Parents of Children (ASD) Social Determinants - Based Upon Victoria Model2
Context Mechanism Outcome
Theme
Evidence
(from parent
interviews)
Social Connections
 Supportive
Relationships
 Involvement in
Group Activities
 Civic
Engagement
Free from Fear,
Discrimination &
Violence.
 Valuing of
diversity
 Physical
Security
 Self
Determination
Economic
Participation
 Work
 Housing
 Education
 Money
Courtesy
Stigma
Withdrawal.
x x x
M H Literacy Offered
conflicting
views on
causation by
various
sources.
x
Waiting
uninformed
Unaware how
long wait will
be.
x
Unable to
work
Low or non-
attendance at
school inhibits
ability to earn.
x
Lack of
Signposting
No signposting
until diagnosis.
x x
Lack of focus
on whole
family
Not feeling
listened to or
engaged with
service.
x
Further
mental
Illness
Parents
described
impacts in this
regard.
x
Resource
quality
Variability in
quality of web
resources
x x

Contact – Paul.Astley@HealthwatchStoke.co.uk
5
Courtesy Stigma & Mental Health Literacy
This section focusses upon stigma. In mental health, much is written about it. Indeed,
the Five Year Forward View for Mental Health3
begins by stating that this has been going
on for far too long. To understand this more, an organisation called Time to Change has
been measuring social attitudes to mental health since 1994. In their most recent report4
,
it was found that since then, attitudes have improved. For example, the percentage
agreeing that ‘People with mental illness should be excluded from public office’
decreased from 29% in the 1990’s to 18% in 2012. Other studies also suggest a change. For
example in an American study, it was found that those with a mental health condition
were not viewed in a stigmatising manner nearly as much as those with substance abuse
issues5
, another domain heavily stigmatised. Some room for optimism then it seems?
However, to what extent this apparent change for the better actually impacts positively
upon patients and their families in reality is unclear. What is clear is that parents who
spoke to us as part of this study clearly perceive stigma, rooted in some surprising places
and perhaps borne out of some questionable reasoning. This following investigates this
through user testimony and aligning it to secondary research such as journal articles.
Compared with Health Literacy, Mental Health Literacy isn’t a topic that has been well
researched. A search for academic papers reveals a relatively small international
community that shadows its’ more mainstream, more developed counterpart. However,
what research there is reveals that although public attitudes towards mental health may
well have shifted, when it comes to understanding what is a very broad kaleidoscope of
mental health conditions, understanding is pretty basic. For example, “In western
countries, depression and schizophrenia are most often seen by the public as caused by
the social environment”6
although their relatives would see the biological as more
important. In other cultures, to this day, the cause may be seen as supernatural
phenomena or even witchcraft! Discourse is indeed varied and allows for
misunderstandings such as telling someone with depression that “there’s always someone
worse off than you are”.7
3
By the Mental Health Taskforce, NHS England - https://www.england.nhs.uk/wp-
content/uploads/2016/02/Mental-Health-Taskforce-FYFV-final.pdf
4
http://www.mind.org.uk/media/463374/118308-attitudes-to-mental-illness-2012-report-v6.docx
5
Corrigan et al, Blame Shame and Contamination; The Impact of Mental Abuse Stigma on Family
Members, Northwestern University
6
Jorm A F, 2000, Mental Health Literacy: Public Knowledge and Beliefs about Mental Disorders, BJP
7
More gems at - http://www.health.com/health/gallery/0,,20393228,00.html

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6
Our Participants
When struggling with their children’s behaviour, our participants all described navigating a
barrage of opinions, rooted in this varied discourse and coming from a variety of sources
including school staff, other parents and their own families. Everyone, it seems, has an
opinion, many of these misguided.
The above suggests that the cause suspected as social. One can understand the roots of
this sort of thinking or the epistemology of it. For example, understanding could be
misconstrued, such as the fact that the adults in the poorest fifth are much more likely to
be at risk of developing a mental illness than those on average incomes8
. In isolation,
8
http://www.poverty.org.uk/62/index.shtml
“I didn’t know what was going on with my child, I was confused and everyone was
giving me different opinions on what was wrong with my child, everything from
he just needs discipline to he just needs a good smack to maybe he is autistic. All
these different opinions and you start blaming yourself as a parent”
Interviewer – Where were these opinions coming from?
“My parents, friends, people at the bus stop, everyone had an opinion, the
school, different teaching staff . . .”
In your previous quoted extract, you have attributed it to an interviewee –
should it not be the case here?
“I was told – Are you sure it’s not you, are you not tough enough with her, is it because
you are a single mum? The blame was all put on me. I was called an over reactive,
negative mum . . . which didn’t help.”
Interviewer - Who was calling you an over reactive mum?
“The School”

Contact – Paul.Astley@HealthwatchStoke.co.uk
7
without further reading this could seem like an explanation in itself. This perhaps opens
wider the space for opinions to flourish within and also the ability to wrongly identify
certain life practices as culpable.
Corrigan et al found that,
“Generally, research shows that psychiatric disorders are viewed as more blameworthy
than physical health conditions like cancer and heart conditions”9
.
Some conditions are more prone to this than others. For example, studies over previous
decades have led many to believe that “ADHD is a disorder rooted in cultural and social
factors”10
. This patchwork understanding of mental health only drives confusion and
ultimately, complicates life and the plight of those looking for answers in a practical
sense, as well as perhaps leaving them open to stigmatisation. Indeed, Kutcher (2016)
says that,
“a lack of knowledge is considered to be a driver of prejudice (negative attitudes) that
then influences behaviours (discrimination)11
”.
The truth of course is that people in poverty are more likely to struggle with the social
determinants of mental health and that in any case, factors including physical causes,
family history and psychological causes are just as relevant. These other factors merely
live in a social context.
This lack of knowledge can be viewed, and indeed it is helpful that it is viewed, through a
Health Literacy lens. This provides a useful framework for understanding stigma.
Attempts by parents to navigate this sea of opinions, driven by low mental health literacy,
perhaps even as a parent without the means (help and advice from a reliable source) to
9
Corrigan et al, Blame Shame and Contamination; The Impact of Mental Abuse Stigma on Family
Members, Northwestern University
10
Youssef et al, 2015, Knowledge and Attitudes Towards ADHD Among Teachers, Sage
11
Kutcher et al, 2016, Mental Health Literacy: Past, Present and Future, Canadian Psychiatric
Association
“what was picked up at his playgroup was his speech delay and I felt very
bombarded by the whole, ‘you are not reading enough to your child at home’ but I
was! I was doing everything!” - - - - - -

Contact – Paul.Astley@HealthwatchStoke.co.uk
8
develop further your own mental health literacy, means it is understandable how parents
may feel a sense of confusion and guilt.
Research shows that blame is not uncommon, indeed the resulting internalised feelings of
guilt are the result of something Ervine Goffman12
called Courtesy Stigma. Goffman
described how it,
“predisposes an individual close to someone affected by stigma to be judged negatively as
well, purely because of the individual’s association to the stigmatized person” (ibid).
Mueller et al describe how “Mothers appeared to be particularity vulnerable to self-
stigma. Statements by other parents, friends, as well as family members led many
mothers to engage in internalising feelings of shame and accusation.”13
Also, “the criticism by others has been found to have negative consequences on the
mother’s wellbeing as reflected by moderate to large significant correlations between
criticism of parenting style on both depression and perceived social support” (ibid)
This does affect people. Mueller et al’s paper described how 40% of parents withdrew,
resulting in social isolation, directly eroding at the determinants of mental health (page
12
Goffman E, 1963, Stigma, Penguin.
13
Mueller et al, 2012, Stigma in ADHD, Journal of ADHD 4:101-114
“I can’t take my youngest daughter who has no issues many places because I don’t
know how her sisters will be so she is missing out”
“one day I did actually say, after a really bad day, I’m not going out again. But
I’m that kind of person, that I’m so stubborn that I will not hide my children
away”
Going out normally on typical weekends can be quite challenging for * because
there are quite busy areas.

Contact – Paul.Astley@HealthwatchStoke.co.uk
9
Health Information Seeking
In the environment described above there are many pressures acting upon an individual
and it may be difficult for them to find the quality advice they need. Although sometimes
lucky (one participant described an excellent teaching assistant), our participants proved
to be resourceful. They described barriers to the signposting and advice needed to build
specialist skills that would help them cope while they were waiting. In particular, it may
be difficult to access advice without diagnosis.
Without formal or reliable informal support, parents turn to the internet. As well as being
popular (all parents mentioned it) it is importantly, accessible even to people who are
socially isolated (provided they have the IT skills of course). This is not something typical
to this cohort. A recent publication by the Office for National Statistics14
showed that
more people use the internet to search for health information than information about
education (2013 up from 2007).
14
Retrieved from
http://webarchive.nationalarchives.gov.uk/20160105160709/http://www.ons.gov.uk/ons/dcp1717
78_322713.pdf
9
24
25
28
31
31
43
50
50
55
66
75
0 10 20 30 40 50 60 70 80
Doing an online course
Looking for a job or sending a job…
Telephoning or making video calls over…
Selling goods or services over the Internet
Downloading software (other than games…
Looking for information about education,…
Seeking health related information
Internet banking
Using services related to travel or travel…
Reading or downloading online news,…
Finding information about goods and…
Sending/receiving emails
Internet Use
When you are on a waiting list you don’t get no support.

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10
The sources of information available are not homogenous but varied in terms of delivery.
Some found peer support through forums.
Cole et al (2016)15
found that the nature of forums is quite different from other sources of
health information on the internet. They found that,
“discussion forums (are) more conducive to the transfer of good quality information than
other types of websites.”
This is primarily because of the value of peer support, as well as the way in which users
are able to comment on each other’s contribution, correcting them as necessary.
However, parents may still need to learn how to best navigate these sites and be able to
differentiate between those that are, or are less useful.
15
Cole et al, 2016, Health Advice from Internet Discussion Forums: How Bad Is Dangerous?
“You look on lots of forums, looking on the internet for different things, so Netmums
and MSAAA, National Autism Society. You become like a researcher because you are
constantly looking for different support groups to support you.”
There is a lot of support online. However, how useful some of that support is, is
questionable. There is a lot of extreme opinions online. So you could a nice official
one (like Face2Face) and its monitored and great and there are lots of unofficial ones
out there. Again, there are lots of people telling them how to look after their kids,
very opinionated people, you get trolls online. There are perhaps groups that parents
need to steer clear of.
. . . . what you do need is coping mechanisms and management techniques.
. . . . strategies around anxiety techniques.

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11
The sorts of information that parents seek will vary by condition, but amongst our parent
group people were looking for skills that would address the immediate need16
.
Considering the context that this is information seeking is occurring in, one participant
suggested that the need for information could become overwhelming. Easy to understand
how this could happen when you are both concerned for you child and perhaps
stigmatised.
There seems to be some evidence that diagnosis is perceived as a barrier to help and
advice that could perhaps be delivered without it.
16
More work could be done here.
. . . . . when seeking information, people shouldn’t get overly overwhelmed and look
for other things in your life, look for other interests. Don’t let that become the focus
of your life because your child isn’t sat there thinking about their autism, they are
just thinking about their life. You need to get out there and enjoy life although it’s
very hard to when you are feeling not well. That’s when you need support.
Interviewer - So along your journey, has anyone ever signposted you or has the focus
been upon getting a diagnosis before that happens?
“No, because school wouldn’t recognise he had a disability, they wouldn’t support
him, they didn’t tell us about (what used to be crossroads), we didn’t know about
Aiming High activities. Going out normally on typical weekends can be quite
challenging for j because there are quite busy areas. Now we have a diagnosis it opens
up doorways because we can access groups now”

Contact – Paul.Astley@HealthwatchStoke.co.uk
12
 Care could be more holistic and whole family (cooperative working?);
 Expectations could be explained at the outset;
 Triple P courses may not be suitable in all cases (in this environment may even add
to feelings of stigmatisation);
 Job Centres may add pressure (when children are in school for reduced hours or
perhaps excluded);
 Day Care for Autism would help.
Interviewer - “If you could go back and give advice to yourself, what would you say?”
 Be prepared to wait;
 Be open minded;
 Avoid the blame game;
 Find interests away from home;
 Seek peer support;
 Learn coping mechanisms.

Contact – Paul.Astley@HealthwatchStoke.co.uk
13
Autism Journey – Case Study
18 months – Tantrums – Interested in specific objects
Health visitor- First Steps – PPP – Therapist – Intervention – Discharged
Age 6 – School Concerns (School Nurse) – First Steps – PPP – ASD Assessment (didn’t
meet criteria (18 month wait)- Discharged
CAMHS did observation in school and the school put on a ‘good show’ with extra
rewards and things, then portraying the perfect child.
Behaviour at school became worse, got the point where he was only doing one hour *
(At school the head teacher didn’t like swearing . . . . . as soon as I got in, kicked me
out again – child)
1 hour (for 20 months) at school a day. Asked the school for a statement for him, they
said they couldn’t do it, also put in a parental request into CAMHS for support again,
we had to go on the waiting list for another ASD assessment. On assessment, the
school put on wonderful show again, again we were told he didn’t meet the criteria.
Worked with our MP for second referral out of the area and got the funding. Went to
Midlands psychology and their observation of autism was completely different to Stoke.
They observed him in three settings. After about 8 weeks in total, they said that * met
the criteria for autism.
It’s taken until age 11 to get that diagnosis.
His High School wouldn’t accept his diagnosis for autism because it was out of area
even though it was funded by the NHS. This has had a negative impact upon * Mum
feels that it may be too late for * now.