Will the doctor see me now? - Investigating adult ADHD services in England An audit of ADHD service provision for adults in England - ADHD Foundation
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
Commissioned and funded by Endorsed by Will the doctor see me now? Investigating adult ADHD services in England An audit of ADHD service provision for adults in England Job Code: C-ANPROM/UK//2102 Date of preparation: July 2019
Contents Foreword1 Key findings2 Summary of recommendations4 ADHD and its impact5 Case study Jannine’s story 6 Methodology7 Understanding the patient population8 Waiting times10 Spending11 The ADHD policy context12 Case study Billie’s story 14 Conclusion 15 References 16 Annex 1 FoI questions 17
Will the doctor see me now? Investigating adult ADHD services in England
Foreword
The scientific evidence showing the lifetime impact
of unidentified, undiagnosed and untreated ADHD is
unequivocal. Equally, the social and economic impact
of treating ADHD and the real cost savings that can
be achieved if appropriately managed and treated,
have also been proven.
In light of this, it is now more Excellence (NICE) and Scottish
pressing than ever that we need Intercollegiate Guidelines Network
an effective and broad reaching (SIGN) guidelines for ADHD with
public health campaign that consistency and inform planning
specifically focuses on ADHD – for ADHD services across the UK.
to draw awareness to the
condition and provide clear This timely report, supported by
self-care strategies for those the ADHD Foundation, proposes
who have ADHD. six key recommendations which are
aimed at helping improve the quality
Alongside this, we also need and provision of ADHD services
effective healthcare system in England.
mechanisms so that the evidence
on the broader implications However, while NHS England and
for physical and mental health the Department of Health and Social
risks associated with ADHD is Care are looking seriously at the
disseminated to all those involved inconsistencies and challenges to
with designing and delivering improving health care for the 1.7
services to diagnose, treat and million people1,2,3 who have ADHD in
manage people with ADHD. This England, we also need to see similar
includes primary care physicians, initiatives developed in Wales,
nurses and commissioning Scotland and Northern Ireland.
bodies and will help to ensure the
implementation of the National
Institute for Health and Care
Dr Tony Lloyd,
CEO, ADHD Foundation
1
Will the doctor see me now? Investigating adult ADHD services in England
Key findings
Takeda conducted a Freedom of Information (FoI) request of every Clinical
Commissioning Group (CCG) in England. 174 responses were received out of 195.
These responses were used to inform the analysis and findings included in this report.
6.9%
(12 out of 174 CCGs
Less than
one third
which responded) of responding CCGs (30.5%
were able to provide or 53 out of 174) were able to
an approximation of provide a precise number or
the number of adults approximation of the number
with a formal of adults they commissioned
diagnosis of ADHD services for in 2017-18
35.6% 25 21
of CCGs were able to provide
a figure for the total amount
of budget spent annually on
16
commissioned ADHD services
for those over 18. Of these CCGs: Less than £50,000 £50,000 – £99,999 Over £100,000
9.8%
Only 11 CCGs
were able to provide a
11
figure for the total amount
of budget spent annually on
commissioned ADHD services
(17 out of 174 for those under 18
CCGs which
responded)
stated that
38.5%
there was some
form of cap
on the number
of adults they
commissioned (67 out of 174 CCGs which
services for in responded) explained that
2017-18 they commission their
ADHD services as part
of a block contract
2
Will the doctor see me now? Investigating adult ADHD services in England
14.9%
(26 out of 174 CCGs which
13.8%
(24 out of 174 CCGs
responded) made no which responded) set
assumptions whatsoever no expectations about
about the expected the number of patients
number of new patients over 18 who would be
over 18 that would receive reviewed per annum
a diagnosis in a given year
Only 104
20.1% weeks
(35 out of 174 CCGs Of those CCGs which did
which responded) provide information, the
were able to provide longest average waiting
information on waiting time recorded was 104
times from referral to weeks, with the shortest
diagnosis being 4-6 weeks
Only 201.5
30.5% weeks
(53 out of 174 CCGs Of those CCGs which did
which responded) provide information, the
were able to provide an longest average waiting
average waiting time time from referral to
or range of average assessment was 201.5
waiting times from weeks, with the shortest
referral to assessment reported being 4 weeks
3
Will the doctor see me now? Investigating adult ADHD services in England
Summary of
recommendations
Recommendation 1
The Parliamentary Health and Social Care
Committee should conduct an urgent inquiry
into the unwarranted variation in ADHD
services for adults
Recommendation 2
NHS Digital should duplicate the Mental Health
of Children and Young People in England
Dataset for Hyperactivity Disorders to record
information for adults
Recommendation 3
Every CCG should make clear in their commissioning
plans how they will implement the NICE Guideline
on ADHD
Recommendation 4
The NHS Long Term Plan commitment to supporting
children and young people with ADHD and their
families through the diagnostic process should be
expanded to include adults
Recommendation 5
The four-week waiting time target, which is
currently being piloted by trailblazer sites,
should be extended to adults
Recommendation 6
Data should be collected about spending on ADHD
so that proper population-based planning can be
implemented within a locality
4
Will the doctor see me now? Investigating adult ADHD services in England
ADHD
and its impact
Attention Deficit Up to 1.5 million adults in the ADHD has an associated burden
Hyperactivity Disorder UK are thought to have ADHD2,3, on carers. Parents may experience
but the combination of poor depression, anxiety and stress,
(ADHD) is a common understanding of the condition, and may feel stigmatised by social
neurodevelopment stigma, and delays in diagnosis groups. ADHD has been associated
disorder4. Estimates means that just 120,000 adults with high levels of family conflict
are formally diagnosed with the and poor family cohesion10.
suggest that ADHD disorder5. The long-term effects
affects around 5% of of untreated ADHD are well The impact of ADHD is not just
documented, with increased restricted to individuals, with the
school-aged children, effects of the condition felt across
rates of other health problems,
equating to over 230,000 poor social functioning, and wider society. While it is known
children and young antisocial behaviour6. that ADHD can cause difficulties
during school-days, there is growing
people, with two thirds Many people with ADHD are evidence of the specific challenges
displaying symptoms also known to have co-morbid in workload and time-management
into adulthood1. conditions. Adults with ADHD in the workplace11,12. Those with
are significantly more likely than ADHD are twice as likely not to take
the general population to up full-time employment13. It is also
experience other psychiatric estimated that 24% of the prison
disorders. In particular, mood population has ADHD14 creating
and anxiety disorders, other an additional strain on the criminal
neurodevelopmental disorders justice system. Undiagnosed ADHD
and substance use disorders are costs the UK billions every year15.
potential comorbidities7. These
conditions can be exacerbated Failing to quickly and efficiently
if the underlying ADHD is not diagnose ADHD can have a
identified and treated. There profound impact on an individual’s
is also a higher mortality rate quality of life. By not prioritising
among those with ADHD8. the needs of people with ADHD
The risk of death is even more we are committing them to a life
pronounced if the diagnosis where they may not be able to
is delayed until adulthood8. fulfil their potential in the workplace,
in relationships and in society.
Early identification, diagnosis and
ADHD can also have a effective management of ADHD
huge impact on social and are critical in removing some
interpersonal relationships. of the challenges faced by
People with ADHD are: people with ADHD.
f our times more likely
to avoid social events9
t hree times more likely
to lose friends9
ve times more likely
fi
to get into arguments
or fights9
5Will the doctor see me now? Investigating adult ADHD services in England
Case study
Jannine’s story
At 18, I was homeless. I slept rough in Luton. I remember
my feet being so cold and wet that I walked into BHS,
took mine off, put a new pair on and left without paying.
No, it wasn’t an isolated incident. I stole food too. And it’s
a slippery slope! I had nothing and no one. By 19, I was
married. I mistook need for love. My daughter came
along soon after and I was divorced by 21.
My (abusive) father offered to Why did I have to wait so long?
help my ex-husband get custody Why did I have to go through all
of my daughter. Far from this of that? ADHD is apparent in my
making me crumble as people school reports and probably in my
had expected, love prevailed. social worker reports. It should have
All the love, kindness and good been addressed a long time ago.
examples shown to me by
strangers came back to me, Sadly, too many are still going
and I began down the road of through this sort of thing. We worry
turning me around. Nothing was about diagnosing and medicating.
going to separate me from the Parents worry about being judged
only person who had ever given or having their children judged.
me unconditional love. My baby Adults worry about prejudice.
girl was my driving force from ADHD is challenging enough to
that day to this. contend with without prejudice
and judgement. Enough of that.
When I went to see my GP to It has to stop!
ask for a referral for an ASD/
ADHD assessment, he made one.
He listened to me and said he
didn’t think I had it, but I probably “I didn’t know peace
had more knowledge on the until after my ADHD
subject than him (I was a teaching
assistant in a special school).
diagnosis. I didn’t
know me. I didn’t get
I didn’t know peace until after
my ADHD diagnosis. I didn’t to thrive. I was just
know me. I didn’t get to thrive. surviving in a mess
I was just surviving in a mess
and a muddle. As I say, I had and a muddle.”
amazing successes and shameful
falls from grace. The middle
ground eluded me, and I had
no roots. I have very stable
roots now!
6Will the doctor see me now? Investigating adult ADHD services in England
Methodology
To better understand how ADHD services are
commissioned and provided, Takeda conducted a
Freedom of Information (FoI) request of every clinical
commissioning group (CCG) in England between 13 July
and 29 September 2018. During that time, 174 responses
were received out of 195. These responses were used
to inform the analysis and findings included in this
report. The full list of FoI questions are included in
Annex 1 of this report.
Takeda has previously audited It is important to note that each
NHS trusts to understand how CCG is likely to treat FoI enquiries
services for ADHD are provided. differently, and the quality of
This audit found that because responses can vary accordingly.
mental health and ADHD services We would therefore caution against
are often provided by multiple using individual CCG responses
trusts in a locality this makes data as a detailed reflection of local
collection and analysis complex practice without further local
due to the risk of double counting investigation. However, we believe
patients. Therefore, CCGs were that this audit provides a good
identified as the organisation most aggregate level picture of the state
likely to hold the data we required of service provision for ADHD in
on ADHD service provision. A pilot England, demonstrating that there
study of 15 CCGs was conducted is a range of approaches to ADHD
to ensure that we had identified and associated system outputs.
the most appropriate organisation
and to test the questions we wanted While it is encouraging that NHS
to ask. Following the success of England has made recent steps to
the pilot, requests were made review ADHD services in England,
to all remaining CCGs. we hope that this report, which
sets out the findings from the FoI
The primary focus of this audit audit and recommendations about
was on adult services; however, how ADHD services could look,
questions were also included will serve as a useful resource to
on services provided to children help improve ADHD services
and young people to gain an across the country.
understanding of CCG population
planning more broadly for
ADHD and expected demand
for adult services in future.
7Will the doctor see me now? Investigating adult ADHD services in England
Understanding
the patient
population
Up to 1.5 million adults in the UK are expected to have ADHD2,3 .
However, we do not know where these individuals are around
the country and many are not diagnosed at all. The FoI request
sought to determine how well CCGs understand their own patient
population. The information provided found that only 6.9%
of those CCGs who responded can provide an approximation
of the number of adults with a formal diagnosis of ADHD,
despite its national prevalence16.
14.9%
It is clear that local commissioners
Of those that responded, lack an accurate understanding of
the information provided the ADHD patient population that
varied between: they serve. This means that they could make no
he actual number
T do not have an understanding of
the demand which will be placed
assumptions about
of patients with
a diagnosis on services in terms of clinical the expected number
he number of
T
time and financial resources. of new patients over
patients registered Being able to plan appropriately 18 that would receive
for a population of patients is
to a GP with ADHD
a key role of commissioners,
a diagnosis in a
he number of patients
T so that they can allocate given year
who attended an resources.
ADHD assessment 13.8% set no expectations
It is therefore worrying that our about the number of patients
audit found that less than one over 18 who would be reviewed
third of CCGs who responded per annum
were able to provide an exact or
approximate number of adults
Just they commissioned ADHD
services for in 2017-1816.
6.9% Almost 15% of CCGs who responded
to our FoI make no assumptions on
of CCGs could the number of possible patients
provide an over 18 that would receive a
diagnosis in a given year, leaving
approximate them ill-equipped for high service
number of adults demand16. In addition, 13.8% of
with an ADHD CCGs said that they had set no
expectations about the number
diagnosis of patients over 18 who might
be reviewed per annum16.
8Will the doctor see me now? Investigating adult ADHD services in England
Only As the CQC found in their A lack of data – both from a
review of children and young local level and a national level –
30.5% peoples’ mental health, gaps in
local knowledge may contribute
makes it difficult to formally
assess the current state of ADHD
could provide to gaps in support. In the CQC services. Without data, it is difficult
report, ADHD is used as an example to understand the number of adults
a precise or of where some commissioners and children with the condition,
approximate and service planners have failed or the level of support that they
to understand the particular needs receive. Without understanding
number of adults of a subset of service users and the population or how services
they commissioned have therefore failed to provide operate, improvement cannot
appropriate care to all children effectively be made to help CCGs
services for in and young people with ADHD18. cope with ever increasing demand
2017-18 The data collected in this audit for services. The path to proper
indicates that this may be the diagnosis and management of
9.8% of CCGs stated that
same for adults. ADHD services therefore begins
there was some form of cap
with proper data collection.
on the number of adults they Challenges in the system are
commissioned services for compounded in some areas where
in 2017-18 access to services is capped or
where specialist services do not Recommendation 1
exist at all. 9.8% of CCGs responding The parliamentary
The NICE ADHD guideline sets out to the request stated that they Health and Social
that adults should be diagnosed implement some form of cap on Care Committee
by a specialist and additionally adult ADHD services, whilst nine should conduct an
that there should be a specialist CCGs fail to commission specific urgent inquiry into the
multidisciplinary team for adults services for ADHD at all16. In some unwarranted variation
with ADHD17. Without making instances, these CCGs state that in ADHD services
planning assumptions it is difficult “If adults with ADHD need to for adults
to ensure that the optimum amount access mental health services they Recommendation 2
of capacity is built in to the system are able to do so within the standard NHS Digital should
so that ADHD patients can receive timescales and would be counted duplicate the Mental
the support they need. Equally, within the overall numbers of Health of Children
assumptions help to ensure that people utilising mental health and Young People in
there is no excess capacity in the services, however they are not England Dataset for
system which leads to waste. separately identified” 19. Hyperactivity Disorders
This failure to provide services to record information
builds upon a lack of forward for adults
planning by CCGs. Recommendation 3
Every CCG should
make clear in their
commissioning
plans how they will
implement the NICE
Guideline on ADHD
9Will the doctor see me now? Investigating adult ADHD services in England
Waiting times
As most areas do not hold information or make assessments about
likely patient demands on ADHD services, it is perhaps not surprising
that waiting times are hugely variable across the country.
Where you live is critical in In response to our FoI request, Only
determining how long you are less than one third of CCGs
likely to wait from being referred
for an assessment or a diagnosis
(30.5%) were able to provide an
average waiting time or range 20.1%
of ADHD, especially given
increasing demand.
of waiting times from referral to
assessment for adults16.
of CCGs were able to
provide information
In many areas, patients experience The range of reported waiting
long waits to see a specialist to times from referral to assessment on waiting times from
be assessed and get a diagnosis. was significant, with the shortest referral to diagnosis
In part this may be because NICE reported waiting time of four weeks
guidelines stipulate that adults with and the longest average waiting Of those CCGs, the longest
ADHD should only be diagnosed by time of 201.5 weeks16. This is average waiting time recorded
a specialist healthcare professional, almost four years. was 104 weeks, with the shortest
as general practitioners (GPs) may being 4 weeks
not have the knowledge required17. Our audit also found that, only
For adults with symptoms of ADHD, one fifth of CCGs were able to
NICE states that they should be provide information on the waiting
Recommendation 4
referred for assessment by a mental time from referral to diagnosis
The NHS Long Term
health specialist trained in the for adults.
Plan commitment to
diagnosis and treatment For those CCGs who were able supporting children
of the disorder17. to provide this information, waiting and young people
times ranged from four to six with ADHD and their
weeks to almost two years families through the
(104 weeks)16. diagnostic process
should be expanded
The NHS constitution states that to include adults
Only no patient should wait more than
Recommendation 5
30.5%
18 weeks for any treatment20. Given
that people with ADHD would need The four-week waiting
both an assessment and a diagnosis time target, which is
were able to provide before any form of treatment is currently being piloted
an average waiting instigated, high numbers of people
with ADHD are likely to be facing
by trailblazer sites,
should be extended
time from referral significant waits in excess of the to adults
to assessment 18-week standard.
Of those CCGs, the longest Given the well documented impact
average waiting time from these delays can have on people
referral to assessment was with ADHD, it is paramount that a
201.5 weeks waiting time standard be applied
to adult ADHD services.
10Will the doctor see me now? Investigating adult ADHD services in England
Spending
To provide the optimum
service, commissioners
Of those CCGs which were able
to provide information, spending
Only 11
need to know how much
figures varied with a difference
of almost £675,500 between 11 CCGs
money they are spending the highest and lowest spends could confirm the
per annuum.
on services. Having this total spend annually
information about The widespread use of block
on commissioned
contracts was cited as one of
spending on adult ADHD ADHD services for
the challenges which prevented
services would help to accurate reporting of
under 18s.
evaluate whether there spending figures.
is the right level of service 38.5% commission ADHD services
Block contracts are contracts
as part of a block contract
provision in an area. for health services where an
annual fee covers a defined range
However, in response
of services. This contracting
to our FoI request only method often means that it is Recommendation 6
35.6% of CCGs were able not possible to categorise Data should be
to provide a figure on spending to an individual collected about
service such as ADHD. spending on ADHD so
the total annual spend that proper population-
for adults. More than one third of CCGs based planning can be
(38.5%) responding to our implemented within
FoI request stated that they a locality
commission their ADHD service
as part of a block contract.
Only 35.6 %
of CCGs were able
to provide a figure
on the total annual
spend for adults
Of those CCGs:
25
21
£50,000 –
£99,999
Over
16 £100,000
Less than
£50,000
11Will the doctor see me now? Investigating adult ADHD services in England
The ADHD
policy context
Historically, ADHD has not received the attention it deserves from
national decision makers. It has been overlooked and under-prioritised,
with Parliamentary Under Secretary of State for Health, Jackie Doyle-
Price, going so far as to say that “services for people with ADHD are
a bit of a Cinderella and I would like to do my best to address that” 21.
However, with an increased Most of the progress in the The Green Paper states that
political focus on mental health, policy environment in ADHD is “Waits for treatment can vary
the situation is beginning to change specifically focussed on children considerably in different areas,
for the better. Positive steps have and young people. While this report with the shortest around four
been taken to begin reducing is focussed on adults with ADHD weeks and the longest in one
waiting times, improve data it is important to understand what provider up to 100 weeks from
collection and streamline the patient national decision makers are doing referral to treatment. Latest data
pathway. This is to be commended, for children and young people as show that in 2016/17 the average
but more needs to be done by a road map for what we should be wait for treatment in a children
national policy makers to ensure demanding for adults with ADHD. and young people’s mental
that all people with ADHD are able health service was 12 weeks” 22.
to access the services and support
which they need and deserve. Following this consultation,
a trial of a four-week waiting
Tackling waiting times time for access to specialist NHS
As identified in this audit, children and young people’s mental
waiting times for people seeking health is being rolled out from
a diagnosis of ADHD can be 2019 in local ‘trailblazer’ areas, with
long and there are unwarranted full national implementation to be
geographical variations. The need decided based on the success of
for waiting times to be reduced these by the end of 2022/2322.
for people with mental health
conditions has been acknowledged The Government has also
by policy makers and work is committed to “record data on
beginning to tackle this. how quickly children and young
people access services, how quickly
Data quoted in a Government they start treatment, and what
Green Paper show that in outcomes are achieved”23. This is
2016/17 the average wait for an important commitment, but we
treatment in a children’s and would urge that these data should
young people’s mental health be broken down by condition so
service was 12 weeks22. However, that ADHD waiting times and
as we found in our audit of adult outcomes can be easily analysed
services there is huge variation as a sub-group.
in the amount of time people
were made to wait.Will the doctor see me now? Investigating adult ADHD services in England
In addition to the commitment It is promising that national not understand the needs of people
to trial a four-week waiting time decision makers are beginning to with ADHD then it is impossible
for children and young people with focus on tackling the long waiting for them to plan to provide the
ADHD, The NHS Long Term Plan times experienced by children right care and support for their
(The Plan), launched in January and young people. However, it is local population.
2019, acknowledged that there essential that this good work is
needs to be more support for extended to include adults too. To help fill this gap in understanding,
children and their families during As set out earlier in this report, NHS Digital published the first
the diagnostic process24. the impact of undiagnosed ADHD ever dataset for ADHD as part of
in adults can be profound, both the children and young people’s
Encouragingly, The Plan makes a on individuals affected by the data set in November 201825. The
commitment to “develop packages condition and on society. information published through this
to support children with autism dataset gives nationwide insight
or other neurodevelopmental and local intelligence. Making such
disorders including attention deficit data available for ADHD is extremely
hyperactivity disorder (ADHD) helpful for service planning and
and their families, throughout the
Improving data collection provision, so that commissioners
diagnostic process”24. Although Our audit uncovered that data and providers have a better
it is not yet clear what these collection on ADHD is patchy, understanding of who the patient
packages of support will include, both geographically and between population is and how to find them.
this is a positive step. These different datasets. This reflects The collection and publication of
packages will be developed jointly findings of national bodies which these data should be extended to
by local authority children’s social have conducted their own audits adults as a matter of urgency.
care, education services and expert of data collected on children’s and
charities. We would urge these young people’s mental health.
groups to ensure that there is
A 2018 report published by
consistency across the country in Improving the patient pathway
the Care Quality Commission
what is included in the packages
highlighted a lack of nationally A recurring finding in this audit
so that every child and young
collected data on children and and from the national policy work
person receives the same
young people’s experience of described above is that there can
level of support.
using mental health services, be a postcode lottery in care and
and the absence of a national support based on which services
database with localised a patient interacts with. The NICE
information. ADHD is given guidance on ADHD provides a
as an example of where some comprehensive blueprint for what
commissioners and service good care and support should
planners have failed to understand look like across the whole pathway.
the particular needs of a subset However, this is rarely followed.
of service users, because of a Implementation of this NICE
lack of data, and have therefore guideline should be monitored
failed to provide appropriate across the country so that
care to all children and young unwarranted variations
people with ADHD. It is clear from are reduced.
this and our own findings that if
commissioners and services do
13Will the doctor see me now? Investigating adult ADHD services in England
Case study
Billie’s story
Billie was identified with Though a very obedient,
“I just cannot believe
compliant child and well parented
speech and language how much my life
with impeccable manners, her
disorder by age 6, childhood was blighted by learner has changed.
displaying traits of autism, anxiety and a growing lack of
but was never given a self-esteem and self-confidence. Understanding that I
formal assessment and
Billie, though academically was not stupid or lazy,
gifted, underachieved, but was
diagnosis. This impacted supported by the school to discovering that if I
on Billie’s ability to integrate remain in mainstream education. was different in a
Her anxiety manifested in
in school, finding it difficult comfort eating, developing positive way – I think
to understand language and into an eating disorder, now of all the things
concentration, experiencing becoming obese by age 13.
I can do and want to
emotional melt downs Billie left school at 16 obtaining do. I no longer think
and becoming easily only one GCSE. Billie was painfully
shy and lacking in confidence, about what I can’t do
overwhelmed. She was easily tearful about anything she and paralyse myself
bullied and found herself thought she had got wrong or
isolated from her peers. any minor mistake, working only with fear of failure.
part time up to the age of 24. Knowing it, naming
She displayed good telephone it – finally getting a
skills and was encouraged to
act as a telephone receptionist.
diagnosis was like all
It became clear to staff that Billie of a sudden, the world
displayed traits of Autism and seemed to make
ADHD and following a programme
of training and support, she learnt sense, I made sense.”
to understand how her conditions
impacted on her quality of life.
5 years later Billie learned to
understand her condition, finally
obtaining a formal diagnosis early
in 2019. Following her diagnosis,
Billie received coaching for her
condition to teach her self-
regulation skills. She is now a full-
time employee and data manager.
She has just purchased her own
home and lives independently for
the first time in her life. Her eating
habits are under control and she is
losing weight which has improved
her physical health.
14Will the doctor see me now? Investigating adult ADHD services in England
Conclusion
The need for better services to properly diagnose
and treat adults with ADHD is clear. Prevalence
figures, service commissioning intentions and planning
assumptions are all important metrics that can give
an understanding of whether the system is working
well for adults with ADHD. But a lack of data and
information on the population, service provision,
and spending are barriers to progress.
This FoI audit demonstrates National level policy work is
that there is a worrying lack of beginning to have a positive
understanding and gaps in impact on ADHD, but to date
provision for adults with ADHD. this has mostly been restricted
There are huge variations around to supporting children and young
the country in understanding of people. This must change so
the ADHD population, waiting that adults with the condition
times for diagnosis and treatment, are also offered high-quality
spending, and data collection. care and support.
These variations are unwarranted,
and action should be taken to We are keen to work with
bring waiting times down. Government and the ADHD
community to find solutions
to these problems and to
ultimately ensure that adults
with ADHD have access to
the high-quality services
and support they deserve.
15Will the doctor see me now? Investigating adult ADHD services in England
References
1
oyal College of Psychiatrists (2016).
R 9
itts M, et al (2015). Impairments,
P 20
HS England (2019). The Handbook to
N
Attention Deficit Hyperactivity Disorder in Diagnosis and Treatment of Attention the NHS Constitution. [Online]. Accessed
Adults. [Online]. Accessed June 2019 via: Deficit Hyperactivity Disorder (ADHD) June 2019 via: https://assets.publishing.
http://www.rcpsych.ac.uk/healthadvice/ in UK Adults: Results from the Lifetime service.gov.uk/government/uploads/
problemsdisorders/adhdinadults.aspx Impairment Survey, Archives of Psychiatric system/uploads/attachment_data/
Nursing, 29(1): 56-63 file/770675/The_Handbook_to_the_
2
aman S, et al (2018), Trends in attention-
R NHS_Constitution_-_2019.pdf
deficit hyperactivity disorder medication 10
oung S, et al (2013). ADHD:
Y
use: a retrospective observational study making the invisible visible. [Online]. 21
ansard (26 March 2019). Accessed
H
using population-based databases, The Accessed June 2019 via: http://www. June 2019 via: https://hansard.parliament.
Lancet Psychiatry. 5: 824-35. Accessed russellbarkley.org/factsheets/ADHD_ uk/Commons/2019-03-26/debates/
June 2019 via: https://www.thelancet. MakingTheInvisibleVisible.pdf E7064C02-6398-4AC8-81F0-
com/journals/lanpsy/article/PIIS2215- 6868DFDB602B/TopicalQuestions?
0366(18)30293-1/fulltext
11
’Regan F (2009). ‘Persistent disruptive
O highlight=adhd%20cinderella#
behaviour and exclusion’, ADHD in contribution-7BEDEB8C-5930-
3
ffice for National Statistics (2018).
O Practice, 1(1): 8-11 4832-A8BD-9CD459FD5240
Estimates of the population for the
UK, England and Wales, Scotland and
12
damou M, et al (2013). Occupational
A 22
epartment of Health and Social Care
D
Northern Ireland. [Online]. Accessed issues of adults with ADHD. BMC (2017). Transforming Children and Young
June 2019 via: https://www.ons.gov. Psychiatry. 2013;13:59. Published 2013 People’s Mental Health Provision: A Green
uk/peoplepopulationandcommunity/ Feb 17. doi:10.1186/1471-244X-13-59 Paper. [Online]. Accessed June 2019
populationandmigration/population via: https://assets.publishing.service.
13
iederman J and Faraone S (2006). The
B
estimates/datasets/populationestimates gov.uk/government/uploads/system/
effects of attention-deficit/hyperactivity
forukenglandandwalesscotlandand uploads/attachment_data/file/664855/
disorder on employment and household
northernireland Transforming_children_and_young_
income, Med Gen Med, 8(3): 12
people_s_mental_health_provision.pdf
4
merican Psychiatric Association
A 14
oung S, et al (2011). The identification
Y
(2013), Diagnostic and statistical manual 23
epartment of Health and Social Care
D
and management of ADHD offenders
of mental disorders. Attention-deficit/ and Department for Education (2018).
within the criminal justice system: a
hyperactivity disorder, p1-9 Government Response to the Consultation
consensus statement from the UK Adult
on Transforming Children and Young
5
enoux C, et al (2016). Prescribing
R ADHD Network and criminal justice
People’s Mental Health Provision: a Green
trends of attention-deficit hyperactivity agencies, BMC Psychiatry, 11:32
Paper and Next Steps. [Online]. Accessed
disorder (ADHD) medications in UK June 2019 via: https://assets.publishing.
15
hire and Demos (2018). Your Attention
S
primary care, 1995–2015, British Journal service.gov.uk/government/uploads/
Please: The Social and Economic Impact
of Clinical Pharmacology. Accessed June system/uploads/attachment_data/
of ADHD. Accessed June 2019 via:
2019 via: https://www.ncbi.nlm.nih.gov/ file/728892/government-response-to-
https://www.demos.co.uk/wp-content/
pubmed/27145886 consultation-on-transforming-children-
uploads/2018/02/Your-Attention-Please-
the-social-and-economic-impact-of- and-young-peoples-mental-health.pdf
6
ICE (2018). Attention deficit
N
hyperactivity disorder: diagnosis ADHD-.pdf 24
HS England (2019). The NHS Long
N
and management (NG87). [Online]. Term Plan. [Online]. Accessed June 2019
16
Takeda, Data on file.
82: 858-868. Accessed June 2019 via: via: https://www.longtermplan.nhs.uk/
https://www.nice.org.uk/guidance/ng87/ 17
ICE (2018). Attention deficit
N wp-content/uploads/2019/01/nhs-long-
resources/attention-deficit-hyperactivity- hyperactivity disorder: diagnosis and term-plan.pdf
disorder-diagnosis-and-management- management – NICE guideline (NG87).
pdf-1837699732933 [Online]. Accessed June 2019 via: https://
25
HS Digital (2018). Mental Health of
N
www.nice.org.uk/guidance/NG87 Children and Young People in England,
7
utt D, et al (2007). Evidence-
N 2017 – Hyperactivity disorders. [Online].
based guidelines for management of 18
are Quality Commission (2017).
C Accessed June 2019 via: https://files.
attention-deficit/hyperactivity disorder Brief guide: waiting times for community digital.nhs.uk/10/D0A0B8/MHCYP%20
in adolescents in transition to adult child and adolescent mental health 2017%20Hyperactivity%20Disorders.pdf
services and in adults: recommendations services. [Online]. Accessed June 2019
from the British Association for via: https://www.cqc.org.uk/sites/
Psychopharmacology. J Psychopharmacol. default/files/20170121_briefguide-
Jan;21(1):10-41. Epub 2006 Nov 8. camhs-waitingtimes.pdf
PubMed PMID: 17092962.
19
Takeda, Data on file.
8
alsgaard S, et al (2015). Mortality in
D
children, adolescents, and adults with
attention deficit hyperactivity disorder:
a nationwide cohort study, Lancet
Psychiatry, 385(9983): 2190-2196
16Annex 1
FoI questions
1. (i) What is the precise number 4. When specifying and
of (a) children and young people commissioning ADHD services, About Takeda
(normally aged 18 and under) and what expectations do you set for Takeda has over 20 years’
(b) adults (normally over 18) you the number of patients who will experience in treating ADHD
commissioned ADHD services for be reviewed per annum within and improving outcomes for
in the year 2017-18? (ii) Was there the services, for (a) those under ADHD patients. Takeda is
a maximum cap on the number of 18, and (b) those over 18? committed to improving the
(a) children and young people and life chances of people with
(b) adults that you commissioned 5. How many patients (i) under 18
ADHD: reducing stigma,
services for in the year 2017-18? and (ii) over 18 in your area have
challenging misconceptions
a formal diagnosis of ADHD?
and improving services and
2. What’s your CCGs total amount
6. What is the average waiting support for patients.
of budget spent annually on
time, in months, for those over
commissioning ADHD services About the
18 presenting with symptoms
for (a) those under 18, and (b) ADHD Foundation
those over 18? of ADHD (a) from referral to
assessment, and (b) from The ADHD Foundation works
3. When specifying and referral to diagnosis? in partnership with individuals,
commissioning ADHD services, families, doctors, teachers and
what assumptions do you make other agencies to improve
about the expected number emotional wellbeing, educational
of new patients (a) under, and attainment, behaviour and
(b) over 18, that will receive a life chances through better
diagnosis in a given year? understanding and self-
management of ADHD, ASD
and related learning difficulties
such as dyslexia, dyspraxia,
Irlen’s Syndrome, dyscalculia
and Tourette’s Syndrome. The
ADHD Foundation also provide
training for GP’s, Teachers,
Social Care agencies and other
professionals, raising awareness
to bring about positive change
and inclusion in mental health,
education and employment.Commissioned and funded by Endorsed by Takeda funded this report. Takeda commissioned MHP Communications, a specialist health policy consultancy, to support with the development of this report. Job Code: C-ANPROM/UK//2102 Date of preparation: July 2019
You can also read
