Theme 1: Information for New Parents

“Early contact with CAMHS can make such a huge difference to all future experiences. Let’s get it right to

begin with and then build on the partnership with parents’ support to help the child.”

4

“Some service standards would be extremely helpful, e.g. waiting times should be no longer than x weeks,

analysis of complaints and feedback, etc. Better information for parents on what they can expect from

CAMHS.”

5

“They could also give us information about the therapies - how they work and what the benefits are, when they don't work and what choices have we then. The child should be able to understand this information too.”

6

“They should give us information at CAMHS telling us about what can be helpful for my child's condition, and signpost information for additional support - there are loads of support groups but you really have to look to

find them.”

7

Theme 2: Parent Expectations

“I learned to do care plans and so we created them with my son should he have difficulties in any of the settings such as school, the gym, or if picked up by the police. It included his picture and some of the things he likes and some of the strategies to use – we were not told to do

this I just thought it should be done as I have more confidence.”

9

‘Better information for parents on what they can expect from CAMHS is needed, many parents wouldn’t have

heard of CAMHS and wouldn’t know what interventions are available, many therefore have high expectations that there is going to be a quick fix solution so when

there is not, their expectations are not met and dissatisfaction creeps in – CAMHS need to explain this to

parents and children and young people and explore expectations.’

10

‘At first my son was very resistant to attending CAMHS for a mixture of reasons. The expectations of CAMHS for

him and for us were not realistic? As we did not fully understand the process. My son felt that because he had to go to a hospital it would be similar to treatment for a

physical illness - medication and then a cure, fairly quickly! He didn’t realise that he needed to be part of

the change. It was not going to be ‘we do this to you and you will recover’, it also required ownership from my son and from his family. At first that was not understood, but

then it was and he developed.’

11

‘I also have a deepening awareness that the needs, wants and expectations of the children referred to

CAMHS and their parents/ carers and the staff are not always the same and that is a recipe for disaster that really needs to be discussed at the start. My child felt

they could only eat 500 calories per day. I wanted them to have therapeutic interventions to get to the

underlying cause, CAMHS wanted me to re-feed her and it took two to weigh her, which traumatized her further, and they did not offered any therapy. None of this was really spoken about or understood and then the whole

thing failed miserably and we went private and turned a corner.’

12

“We could do with a session delivered by CAMHS about CPA and good guidance about how we can run / own the

CPA in order to make it work for our children.”

13

“We are passionate about getting CAMHS right for our child and also we want to get it right for other parents so

as to help other children.”

14

“CAMHS need to look at parent expectations - more time is needed to explain and help the parents understand - parents need time to come to terms, perhaps grieve for

their child's situation - why and how have CAMHS become so entrenched on diagnosis?”

15

“CAMHS seem to be creating unhappy parents. It is true as a parent I can say some parents can be unhelpful to

their child's situation / condition - but all the more reason to help those parents to understand - to work with them

to help the child.”

16

“CAMHS strategies are sound, I could never disagree with them they all sound excellent but it’s not translated

and nor is it delivered.”

17

18

Theme 3: Reducing Stigma

“I feel that improving these services is important in helping to remove the stigma associated with mental health issues in young people, and providing a service that looks at the whole picture and is responsive to needs of the family.”

19

‘In schools there needs to be a greater discussion on mental health and how it can be supported by children and young people; and also within the workforce, as well as what the

pathway and appropriate services are available and how to access it. This is an issue which needs to be discussed in

schools - what is mental health? How it can be supported, by ourselves and by services and relevant staff? Guidance on how to make appropriate referrals for school staff and

especially if they are going to introduce self referrals. CAMHS need to be in schools, they need to be visible, they need to have sessions with young people on CAMHS and

mental health. Sometimes it is more beneficial if not done by school staff. My son thought he was the only one with a mental health problem, he felt everyone had good mental

health and he didn’t, and this further affected his confidence and anxiety.’

20

“It is a comfort to me knowing that people will understand and not judge us”.

21

“They changed our son’s appointment to another place, which we found out was a secure unit, as the Psychiatrist

worked there - we were terrified and our immediate thoughts were that we were being asked to leave our son

there. He was really frightened for a long time after that.”

22

“CAMHS need to operate more in local community settings – I work within CAMHS, even with my

professional experience going into a hospital there is a power imbalance and there is still stigma sitting in a mental health hospital, which I hadn't appreciated

before.”

23

Theme 4: The‘Referral Process’

24

‘As a parent and someone who works in Children’s Services I find there is not enough knowledge for staff across the sector on how to complete an appropriate

referral to CAMHS, one which clearly identifies risks and levels of functioning which may have become challenged through the mental health problems. There is too much room for misinterpretation on these referral forms and

specifics are missed and not identified through the referral process. They also need to ensure they get the parents consent and include some of their story on the

referral form.’

25

Theme 5: Meeting the Needs of Parents and Carers

26

"One of the things I ensured was to get recorded in assessment the views and wishes of my child, myself

and my husband -  that was really important and again to ensure it is said with each team that we are working with and then regularly checked that it is happening."

27

“When my daughter needed CAMHS I was being made redundant, this probably turned out for the best as I

would have lost my job it was so time consuming. What was worse it was so mentally draining and we had to

learn so much about the mental health and its systems and there were huge costs involved such as time at

meetings, great distances to be travelled and staying overnight which my redundancy also had to support.”

28

‘The mental distress of my son had a huge impact on mine and my husband’s relationship and also on my youngest child. There does need to be more thought

given to the whole family.’

29

‘My child’s mental distress did have a huge impact on myself and my husband’s relationship and on our youngest child – there is no support, no support

mechanism, yes you can argue that this is not CAMHS’ problem, but it is so interwoven between the family and tends to originate due to the mental distress. Support is

needed for the family. CAMHS do need to understand the needs of the family as there could be multiple issues

going on - shame, stigma, employment difficulties, fear, grief, confusion, anxiety, terror - the list could go on. The

needs of the family need to be really understood.’

30

‘I have a son who is aged 14 who was referred from school due to significant anxieties in school. He was doing lots of everyday functions, getting washed and dressed and talking to family and close friends and he

wanted to go to school so he would get himself dressed and ready for school, he also would study online so as not to miss education. At the allotted school time he

could not leave the home as his anxiety would increase. We would even take him out in an effort to socialise but again, this would be problematic as he could not get out

of the car. His anxiety made him a prisoner within his home as he did not want to leave it.

The school and the Education Welfare Officer were

supportive as they had known he had previously seen private therapists, however his anxiety was increasing.

The school viewed this as a medical non-attendance, but I know other schools who don’t unless there is a CAMHS

diagnosis.’

31

‘My child wouldn’t go to school, he was so anxious he would be sick, he would be ready to go and then couldn’t go into the school. School wouldn’t accept this without a CAMHS diagnosis, we were referred to CAMHS they seen

him once and me twice and said they couldn’t give a diagnosis. I was then criminalized for school non-

attendance. This would have happened again only I decided to take him out of school and home school him his anxiety decreased and he became much happier.’

32

‘My child had a suicide attempt after months of severe self harming, looking back I was traumatized I don’t think I could really function, I was so frightened I was going to loose them – I didn’t realize that at the time and no one mentioned about getting support for myself – they could

have suggested or referred me to counselling. I eventually got that a few years later and really saw the impact it had on me and my relationships at that time.’

33

• ‘Poor communication and liaison between medical and psychological services

• Unclear routes of access• Conflicting advice offered• No support during a period on a waiting list. The

current triage service in operation fields calls but provides no advice for supporting a child

• Insufficient information is given to GPs about the referral process; the system is not ‘joined up’. Effectively parents act as a liaison service between GP and CAMHS, rather than the other way around

• Long waits in waiting rooms for children prior to appointment.’

34

‘Having spoken to some parents who have been in a similar situation there were some common areas of

frustration – for example:•Months between appointments without support is not acceptable in vulnerable young people, as it causes greater risk•The whole family is affected and needs support•Providing an environment that is accessible and friendly is extremely important•To not have to repeat the same information over and over again because there is so long between appointments. Information should be shared to relevant people involved.•To offer information and support networks to young people, carers and family members• To provide a personalised service – everyone is different. • To provide telephone support/mentoring/support groups.’

35

‘I am a parent but I am also a carer for my son who has chronic mental health problems and for which I am

involved and it is complex, I have benefited from a carers assessment and getting some support through that, I

have mentioned this to other parents and they are unaware of this, CAMHS should promote this as there are

entitlements which can make life easier, protection at work, respite, carers groups etc.’

36

‘What I wanted was hands on practical support on how to manage my daughter’s mental health issues.

Fortunately I did eventually receive this support from one of the psychologists at the local CAMHS service, but I had

to speak to the manager about this, it was not forthcoming. The advice and information I received

made such a massive difference to the way I managed and coped with my daughter’s mental health issues on a day to day basis. I truly believe that parents should be offered this support, you only need a couple of sessions

but it would make a huge difference.’

37

‘Face to face specialist parenting support and information around young people’s mental health issues is not readily available – CAMHS could ask us what would

be helpful and then start compiling resources leaflets, websites, helplines, specialist services, building

resilience.’

38

‘What professionals think people need and want is not necessarily what they do want and the only way to show they understand is to really listen and involve children

and young people, parents and carers.’

39

‘I was waiting on a CAMHS waiting list and I was losing patience as my child was distraught and I needed help, I

phoned up and was told there was 1700 on the list before him – I don’t need to hear that, what am I

supposed to do with that information? If we had 1700 children and young people who had broken their foot and there was no service for them in one place it would be a

National Scandal.’

40

“Trust, faith, confidentiality and understanding our needs and our culture is so important - if that is right, we will

happily work with you.”

41

“The staff must be like us as they understand our needs so well and are very warm and friendly.”

42

“As they understand us, it adds to the quality because they understand our needs better.”

43

“And after my sessions I wasn’t feeling good, I was still sad to do something badly. I want to kill myself again

because the problem no finish. (Spinning World) give me another chance to come in again to speak. I know that cost a lot of money and I asked for the same person

again and they give me the same person again. That was very important. She encourage me (to) continue on the life. She still continue working together with me, that is

very important. I think (Spinning World) give me the chance to have…. a second life.”

44

“Parents are not given advice on what to look for about mental health issues in the same way as they are for

physical illnesses such as Diabetes, Meningitis etc.; and so they cannot spot things (i.e., we were told that our

son was just entering his teens early and that we needed to adjust our parenting skills - that just made things

worse!)”

45

“CAMHS service is very poor in our area, so much so that we are now paying for our youngest daughter to attend a private CAMHS run by the Priory Group - something we

can ill afford.”

46

“Having spoken to some parents who have been in a similar situation there were some common areas of

frustration – for example:

1. Months between appointments without support is not acceptable in vulnerable young people

2. That the whole family is affected and needs support3. That providing an environment that is accessible and

friendly is extremely important4. To not have to repeat the same information over and

over again because there is so long between appointments. Information should be shared to relevant

people involved5. To offer information and support networks to the

young people, carers and family members6. To provide a personalised service – everyone is

different. Telephone support/mentoring/support groups for people.”

47

What I wanted was hands on practical support on how to manage my daughter’s mental health issues. I spoke to the CAMHS manager and got

two sessions about how I could help . The advice and information I received made such a massive difference to the way I managed and

coped with my daughter’s mental health issues on a day to day basis. Looking back on the mental health ‘journey’ I have been through as a

parent, I think simple support mechanisms and information could make a big difference for lots of parents. For example:

• Leaflets containing practical information e.g. giving a first aid kit for self-harming

• Face to face specialist support in times of crisis• A list of useful websites and books recommended by other parents (it’s difficult to know where to start and there is a mix of good and bad advice

in the internet maze)• An explanation of the CAMHS process and the reasons why parents are excluded from information and feedback. (Once this is understood it is

easier to accept)• Parent support groups to enable peer to peer support

• CAMHS really need to think Family.

48

“When I asked CAMHS for support following my daughter’s attempted suicide I was initially signposted to

my GP who referred me to counselling - this was a harrowing time, and so parents do need support to help them though. They have to keep themselves strong as well as strengthening the family, we were all in shock -

the siblings may also need counselling too.”

49

“I was told I was an 'overprotective neurotic mother' it was not fair. I then had a long and stressful battle of 12

years of CAMHS mainly periodic medication reviews. This went on a few weeks ago when my child was discharged

back to his GP and that was a week before his 18th birthday.”

50

“We had an understanding which was discussed that I would not need to know what my child was discussing, but expectations were made clear that if it was certain issues then I should be involved, e.g. a physical issue.

Other situations to be discussed should be a diagnosis or wanting to asses my child for a specific presenting

problem; medication; trauma; low mood and anxiety, especially if it would have an impact on the family;

certainly any suicidal thoughts, self harm or substance use; conflict; sexuality; bullying; gender identity.”

51

“Why not 'train' the parents in resilience so they can give better support at home - they could even include CBT

and mindfulness - we know many young people struggle to access / attend therapy.”

52

“When my son was in tier 4 I had to force the team to focus on our son’s 4 key areas that would help him:

-Education-Sport

-His dog-And his guitar…”

53

“After 2 years of trying to get help for my daughter, I felt very alone with her problems. So at the time of the

assessment, I was emotional. When I saw the team they said to me, as though I was part of the problem, ‘If

you’re so emotionally unstable it is any wonder your daughter is struggling?’

I felt completely judged and misunderstood”

54

“I don’t think CAMHS realise the strain we are under, such as heating the home, providing food, paying the rent. These are the things that will keep me awake at night, let alone some of the problems the kids have. I

sometimes feel so very trapped, having very little or no money.”

55

“Sometimes, I think they make a judgment about our life without knowing the facts – CAMHS needs to understand

what our needs are.”

56

“Whilst I so desperately want to be able to help my child it can be difficult to juggle this with my everyday role of being a mother and being a wife. At times there are just

too many demands.”

57

“I had expressed my concerns that my child would say anything to stop going to CAMHS so that she could be

discharged, even though her behaviour had not changed, especially when it came to eating or not eating and other harmful behaviors. But my child was discharged without any discussion with me and I found myself back to where

we had started from.”

58

“As a parent I do worry about my child and I guess that’s the same for many parents, as we are implicitly carers. That becomes much more explicit if our child develops

complex mental distress at levels beyond our capacity as parents to manage. The parents’ / carers’ needs really

need to be understood - what impact is caring having on their own lives and on their families’ lives? What is the impact on their own mental health, their employment, their family relationships, the relationships with their

child? I wonder if that is really understood by CAMHS?”

59

“We were perceived to be the problem. We were bad parents who could not control our children and their

distress was seen as of our doing.”

60

“I felt with CAMHS you had to fit into the way they worked and they never responded to our needs. Because

of that they failed him and me and my family.”

61

“If CAMHS staff understand our needs it adds to the quality of the service through a responsive approach -

then we see our kids improve.”

62

“What helped me was attending a course about mental distress, the more I knew the less afraid I felt. I regained a sense of control as I understood what was going on.”

6363

x Theme 6: Service Information for Parents and Carers

64

“I also have a deepening awareness that the needs of the children referred to CAMHS and their parents are not

always the same, and that failure to offer adequate support to parents during the initial referral process, as well as during the waiting period (which may often be a period of crisis for the child and their family) and then

during on-going treatment, is unhelpful.”

65

“There is some fantastic parent training out there, I attended one on how to empower families that was very good, others are more tailor made to specific conditions

which again are good - but I know of instances where parents have been sent to the wrong parent training

program and that can do more harm than good.”

66

‘CAMHS family support workers would be really useful - not tagged on to a role, but specific family support

workers who could work with parents and families not therapeutically but practically. They would need to have

a good knowledge of the CAMHS system in order to explain this to the family, but they do need to be specific

to CAMHS.’

67

‘I felt CAMHS could have done more to explain to our child and our family the process of what would happen

and how. I tried, but had a limited knowledge. I certainly think that greater communication is needed from CAMHS in order to explain things, kind of like a drop-in prior to

first appointments, and perhaps parents who have been through the process could also support this with CAMHS staff. This would have prepared us and could have made the process smoother / effective. My son had to reflect midway through the sessions as his expectations were not being met, he wasn’t going to get tablets, it was

about resilience and recovery.’

68

‘At a public health level parents are not given advice on what to look for about mental health issues in the same

way as they are for physical illness such as Diabetes, meningitis etc. and so they cannot spot things (i.e., we were told that our son was just entering his teens early and that we needed to adjust our parenting skills - that just made things worse as it was not about adolescence

it was about mental distress.)

69

Looking back on the mental health ‘journey’ I have been through as a parent I think simple support mechanisms and information

could make a big difference for lots of parents. For example:• Leaflets containing practical information e.g. giving a first aid

kit for self-harming • Face to face specialist support in times of crisis

•Mental Health promotion material aimed at children and families

• A list of useful websites and books recommended by other parents(it’s difficult to know where to start and there is a mix of

good and bad advice in the internet maze) • An explanation of the CAMHS process and the reasons why

parents are excluded from information and feedback. (Once this is understood it is easier to accept)

• Parent support groups to enable peer to peer support • CAMHS could offer a ‘think family’ approach to services as

parents can be both part of the problem and solution•The need to promote Carers Assessments .

70

‘I think CAMHS would benefit if they employed family support workers to work with the family, but they do

need a good overview of CAMHS and mental health and need to be employed by CAMHS, they would then work

with parents and carers and families advocating at meetings, helping them resolve issues, providing them

with information giving them additional holistic support – that would make a huge difference.’

71

“Our experience of CAMHS has been that the system is difficult to access and when accessed it is disjointed and

frustrating. It seemed to us that the focus was on the appointment and then being sent away until you hear

about the next appointment – often months later.”

72

“We have had to work strategically and logically within this system - we sought independent advice and guidance so we could make it work for our child.”

73

“I also think parents should be told what treatments / interventions are on offer and how they work - mare there any side effects to them, or changes we may

expect to see? How will we know if it working and how does it work? We also have the family to consider.”

74

“I got some helpful information from the YoungMinds website and Parent’s helpline. It was a fluke that I came across this. It would be good if CAMHS advertised these

services, as I think that would also help parents.”

75

“You build my resilience and I too can build resilience in my child.”

76

‘I have to say, I work in a school and so know the system fairly well. However, I see so many families who have many difficulties and who don’t understand children’s

services and CAMHS. I guess if you’re a parent then you wouldn’t necessarily know about these support

mechanisms, which can be daunting and complex for those who work in the field let alone the ones who are

referred into it.’

77

Theme 7: Explaining what the CAMHS offer is e.g. simplifying language’

78

“They use so many acronyms and they are not helpfulWe received a letter for my daughters appointment which

was signed off:

the therapist name and then the therapists job title and then, CYPIAPT trainee, CYPIAT CAMHS ……Partnership,

Name of the CAMHS service and then a string of professional  qualifications

I don't know what all that means but it's daunting - the role and the name of the service would be sufficient.”

79

80

81

Theme 8: Service Marketing

“Still many parents don’t know that CAMHS exists, or if they have heard of it, they don’t know how to access it

and even then they can’t go direct to them they have to go through another service – that can be a recipe for

disaster”

Theme 9: Opening hours & Accessibility

83

‘CAMHS were really helpful, they knew of my work commitment and so set early morning appointments or

after work so I could take my child. That was really important and I will always be grateful to them as they

were excellent.’

Theme 10: Child care

85

Theme 11: Equalities Agenda

86

“Asylum Seeking, Transition, Trauma and PTSD, loss of homeland, family, loss, new cultures and

the experience and clash of new cultures for the child which can further cause mental distress.”  

87

‘We certainly need to see more cultural competence in relation to Gender Identity in CAMHS and in GP’s and in

Schools, or children and young people won’t come forward for help and we know that suicidal thoughts and

self harm are huge issues for young people who are struggling with their gender identity.’

88

“If the staff show respect and accept your culture then good relationships will be built, and from that confidence

grows. ”

89

‘Especially for young people who have neurodevelopmental conditions they may find it more

beneficial to use technology to discuss things with CAMHS. My son did he couldn’t go and see a face-to-face counsellor but he could do so over the internet, and that really helped him. It really alleviated anxiety, which he

needed at that time in his life.’

90

Theme 12: Successfully managing equalities and working with

parents/carers with protected characteristics

91

““If it is the will of Allah!” then mental distress is not an issue to be afraid or ashamed of”. Other views were about the perceptions of mental health in the country of

origin and how stigma could be present. The parents acknowledged that not all parents would hold their

views, some may find mental distress as demonic or feeling cursed, whereas for some it would be seen as an

aspect of faith and spirituality.”

92

“Acceptance and respect for the culture is very important and enables good relationships to be built, and also ensures that parents have confidence in the staff of

the service.”

93

‘The reason I am doing this is because we need things to change. I know this is potentially a huge issue and

actually bigger than we think, so we need to make a little difference here and there and I hope someone takes my

account on board. The increase in children and adolescents with Gender Dysphoria is not being

accommodated by NHS services. As a result some teenagers are taking matters into their own hands and

buying hormones from the internet and self-medicating, this must be avoided due to the dangers of this practice.

Others are self-harming and thinking of suicide, many with high levels of anxiety and low mood. Better and more timely support by CAMHS could go a long way

towards preventing these issues.’

94

“Sometimes our children have to deal with clashes of culture. They may start off in single sex schools or not go to schools and then they end up in British Schools where values and standards may be very different. New experiences also causes problems as we and the child have to deal with that – in Spinning World they have been very good in helping us deal with that.”

95

“The project established itself as an accessible and appropriate therapy service, seen by other organisations

to be culturally skilled and effective, and to be a lead service in the area.”

96

Theme 13: Outreach to ‘Hard to Reach Parents’

97

“There is an opportunity for services to think about how they can tackle mental health stigma in relation to

cultural diversity. One way is for the CAMHS services to get into different cultural communities and work with

those communities to gain greater insight and understanding, and then promote important mental

health promoting messages aimed at the community. The aim would be to work with those communities to get promotion / marketing materials of their service right for the needs of the people who so often remain invisible to

services.”

98

“A faith room for us, so that we can pray in the middle of the day, that we can use. You see they understand how our faith is very strong to us and that tells us that these

people understand and want to understand us.”

99

‘My family has a mixed ethnicity and some members of my family would not attend CAMHS as they feel that the

service is not culturally competent. It doesn’t engage with the ethnic community in our area, if it did it would

be quickly endorsed and that would be a start to becoming more culturally competent and reaching out to those who really need it and they would start attending.

They could even hold satellite clinics in community centres or faith places. I guess each CAMHS need to truly

assess themselves for cultural competence, not a tick box exercise but really become culturally competent.

Because they want to.’

100

Theme 14: Working in rural areas

101

“We need extra CAMHS support in rural schools, staff are great and are very nurturing and quirks and behaviours

can be accepted (especially ASD, Anxiety, ADHD, sensory processing difficulties etc.) The child may

become a victim in the transition to secondary school. CAMHS could help the school think through some of the issues about some of the children that would be early

intervention.”

102

103

Theme 15: Working in rural areas

104

“They should explain more to parents, you know, give them strategies for how we can strengthen our child.  I know my daughter self harms. It would be good if they can explain to me how I can help her - I don't need to know why – they say we're part of the system when it comes to the problem but not the solution and that is

what we want to be.”

105

Theme 16: Consultations

106

“Where is the care program approach (CPA) in CAMHS? We had to get in their and own it with my child, but I

know many others who do not know how it works, do not know of its existence or who were promised it without it

materialising. We need to educate parents about it.”

107

“My child's behaviour was blamed on my child and not the system around him - and that system is wider than

the family”

108

Theme 17: Self Referral & Referral Processes

109

“We knocked on many services doors asking for help and no one listened or helped us, until we came here, these people then asked the same services for help and we

then got help – why should that be the case, why wasn’t our asking for help good enough?”

110

“We were referred to a paediatrician who failed to identify my child’s mental health problems; we put up a fight so he then referred us to CAMHS who also failed to

see the mental distress. We then went to a private Psychologist who could see mental distress, who then asked if we could refer to a private Psychiatrist who

further could identify mental health difficulties. He then wrote a referral back to the original CAMHS service who accepted the referral and could then start to work with us. I had to use my redundancy money to make that happen - what would have happened if I did not have

that money?”

111

‘There is a huge gap between everyday pastoral support for children who need resilience built or who need

targeted interventions in order to ensure their mental health problems do not deteriorate. We know that

referral thresholds for CAMHS have been significantly increased and so there is no other support mechanism in

place. What happens to them? Do they just fall into a gaping hole? Are we to wait until they become

significantly distressed whereby they meet the referral threshold to get the support – that’s often a huge risk?

Does this mean we have early intervention policies which are meaningless? We need to hear parent voices on

those strategies so it’s not all aspirational but there is a reality check.’

112

“Certainly if a child has already been seen I don’t see why they can’t then self refer, or why we can’t refer

them.”

113

“I would like to know why the likes of GP’s and teachers don’t seem to know how to make a referral to CAMHS? If

they are unable to do so, that tells me there is something wrong with the system.

Even more frustrating is when wrong information has been given which delays the referral. Have they any idea how frustrating this is? My daughter was suffering - she

just needed help.”

114

“We know our children, we see the changes in them - at that point we should be able to make a referral

ourselves. If it’s not a mental health problem our minds will be at rest, and if it is a mental health problem we will know something will be done. I would much rather do it

that way than have to be reliant on someone else translating the information, hoping they do it right and

then waiting to see if something will be done. It all takes too long and it isn’t a very reliable process.”

115

“Why can’t we self refer? We know our children - it would be really helpful when I'm put on to a waiting list to be

told how long I will be on that list for. Is it a month?3 months?6 months?

A year ?Will I ever be seen?”

116

“It took me ages to get an appointment. CAMHS really need to promote their services more. Only after it had

became a huge problem in school, with the school threatening legal action, did my GP get me help and even then I waited ages - by then the problem had

gotten much worse.”

117

“We knocked on many services’ doors asking for help and no one listened or helped us, until we came here. These people then asked the same services for help, which we received. Why should that be the case, why

wasn’t our asking for help good enough?”

118

“I mean, if she had broken her leg she wouldn’t have had to wait months, she would have got immediate

treatment. No one would expect her to hobble around on a broken leg without support, so why is this different? It takes too long and problems get worse if they are not

dealt with early enough. Her head was going around like a washing machine filled with anxiety, depression, low

mood and harmful behaviours.”

119

Theme 18: Input into CAMHS Strategy/ Child/ Young Person Emotional Health

and Wellbeing Strategy

120

“As you are doing these parent focus groups across the country, don’t you think each CAMHS should also do

these focus groups to see what parents who use each CAMHS service have to say? Parents could then work in

partnership with their local service too.“

121

Theme 19: Development of Pathways

122

“I had I over 300 miles to travel to see my child in tier 4 provision and they weren't that flexible with when she could come home. We wouldn't get home till very late Friday night, we were tired on the Saturday and had to start back early on a Sunday – they wouldn’t make any

allowances, we had to fit in with their model.”

123

‘There is an increasing need for the CAMHS service given the rise in eating disorders, self harm etc. and the prevalence of conditions like ADHD and autism and it is vital to ensure that the service has enough capacity to

cope with the changing needs of the children and young people presenting to them. It seems everyone is grouped in together, we need to develop pathways more clearly.’

124

‘CAMHS need to decide if Attachment Disorder is a mental health problem and if they do recognize it as

that, they need to have provision in place. I am a kinship carer and my grandchild was diagnosed with this after lengthy assessments but no therapeutic work done as our CAMHS is not commissioned to deliver a service for

attachment disorder. CAMHS in the next county does but we can’t access it, my grandchild has very violent

outbursts and there is no support for her or for us on how we can deal with it – it’s truly shocking.’

125

“My child was put into tier 4 then was discharged as it was not suitable, I've heard this is the experience of

other parents too - so why does that happen?”

126

“Some CAMHS work with the voluntary sector and this is really good as we get wider choices, they work in a very different way, less stigmatizing, they are so much more helpful and tend to have a wider choice of support which

is young person friendly and they seem to get good outcomes.”

127

“Not all children and young people like talking therapy, there need to be more alternatives.”

128

“My child had speech and language difficulties on top of their mental health conditions - that doesn’t get picked

up enough - do they have Speech and Language Therapists in some CAMHS or do they work closely? My

child had great difficulty in expressing themself and therapy wasn’t really the answer without Speech and

Language support.”

129

“We need more community services for eating disorders, they have to happen - the answer is not to go into Tier

4 , 300 miles away - we parents have great insight as to what they need and we should be consulted with more.”

130

“Ban waiting lists as the child's functionality becomes really compromised due to their mental distress.

When the referral is made they may be withdrawing from school due to anxiety however by the time we are

assessed or starting therapy they (the child) have locked themself away in their bedroom. The problem becomes

much worse and harder to support.”

131

“Make early intervention a reality - the policies are great, the reality is not like that.

Put resources in early on and certainly think of interventions which can be done while on a waiting list.”

132

“Please, please, please make sure education is connected to CAMHS - it needs to be a golden thread

running through it.”

133

“Our CAMHS team didn't know about the new EHC plans - that concerns me, as they should be joined up and part

of that agenda / discussion.”

134

“Tiers 2&3 lines are not so clear and they are not very transparent - we should have really clear referral criteria

which also lets us know what the responses / interventions will be.”

135

“There is lots of public health information for children, e.g. meningitis. We need some Public Health early

warning signs resources on children and young people's mental health.”

136

“CAMHS and the Mental Health are too often 'box ticking'But what they really need is to explore this from the child's or parent’s perspective to ensure it is child

centred practice.”

137

“There is an increasing need for the CAMHS service given the rise in eating disorders, self harm etc. and the prevalence of conditions like ADHD and autism and it is vital to ensure that the service has enough capacity to

cope with the changing needs of the children and young people presenting to them, parents should be able to

influence some of the thinking about service provision”

138

“We do need more support for young people, like they do in Birmingham. They get good support up to the age of

25.”

139

“Parents also need to be at the centre of CAMHS (participation)

They need to understand and be included or they will fear being judged and blamed, not only that if we crack,

where does the situation end?”

140

“My child (when they were admitted into hospital) learned even more 'bizarre' behaviours - they should

think differently about Tier 4 and provide us with more support so we can keep the child at home with greater

additional support.”

141

“My child was placed in a tier 4 unit which was 60 miles away - in 6 months I spent £2400 on travel alone.”

142

Theme 20: Service redesign or development of a new service

143

“In my area I am starting to see some of the benefits of Children and Young People's IAPT - it is positive and it is

making a difference but we still have a way to go.”

144

‘As a parent and professional working within a special school, I see CAMHS attend on a fortnightly basis and

they offer consultation to staff and also to parents. That model works well, it’s a step up from pastoral care, and in between referral thresholds, hopefully this prevents referrals and builds resilience in the child or perhaps it

identifies appropriate referrals as there is a space to talk it through and try different approaches and see the

bigger picture going on in with regards to the child. This approach developed as CAMHS were offering a model which was not very effective and so they listened and developed a new approach. There is an openness to

parents and a responsiveness to need - that is what will work best.’

145

“I have just had to be firm with the commissioner and tell them that I want to be on the pathway development for eating disorders they didn't have any parents on it or young people - but it would be better with the insights

we can bring.”

146

‘More must be done to help children to stay home and if they do need to be hospitalized, for that to be locally.

Parents are a vital cog in the recovery for our children – they cannot do it from 100 miles away

Parents have ideas as to how we can develop Tier 3 Plus services that would save many form going into hospital

and that would be so much better and would make savings – parents should be asked about these issues.’

147

‘I am interested, as I believe there is an urgent review required of both the current services and the services

that are needed, and subsequent change is long overdue. The service simply has to improve, and I would like to know who is responsible for assessing the service offered. Who monitors standards? My child will be under CAHMS for a considerable amount of time, and I would

like to be able to witness a change for the better. I want my child to receive the best possible treatment, rather

than a second rate service.’

148

“If you look after the mental health of the parent and teach them ways of building resilience, then you can

support the child so much more effectively.”

149

“The types of parent training programmes which are really helpful are:

-Those that teach how to look after yourself-Those which help with accepting distress

-Strategies for dealing with classic situations-Those that offer a wide variety of options and help you

think through how you can translate them to your situation

-Those which help find a balance-Recognising when something is not going to work itself

out in a few week’s time.”

150

“I do understand that mental health is complex and the child, parent and family needs to engage – it’s not about a mental health professional doing something to you –

you have to own what they are doing. Children and young people should also be taught how they can look after their own mental health and so should the family.

How can we strengthen the child and each other? I guess it’s about building resilience, but it’s questionable if

there enough of this going on in our schools, youth clubs and other places young people attend.”

151

“More must be done to help children to stay home and if they do need to be hospitalised, for that to be locally.

Parents are a vital cog in the recovery for our children – they cannot do it from 100 miles away -there should be more home based recovery support -I think some areas

call that Tier 3 plus.”

152

“If it’s the child and family who are benefiting from a CAMHS service then it's the child and the family who will have the greatest insight into both the positive and the negatives of that service; therefore they are the ones

who can provide the greatest insight into how to improve it.”

153

“I feel that the service is struggling to cope with demand and we need to look at how the service is commissioned,

and how present and future demand is planned for.”

154

“They told me that they were not commissioned to do that work, but they didn’t think anyone in our area is. So

who do we speak to in order to get someone to commission this service? My child can’t be the only one with these difficulties. CAMHS could work with us to do

something about this. We could put up a good case as to why it should be commissioned.”

155

‘I feel that the service is struggling to cope with demand and there is a real urgent need to look at how the

service is commissioned, and how present and future demand is planned for.’

156

“CAMHS and parents need to be able to influence changes to the Mental Health Act for young people, as

it’s written for adults and for box ticking, and not from a young person’s perspective.”

157

Theme 21: Satisfaction and evaluation of service

158

“Sometimes they seem to diagnose every child as having ADHD; when I spoke to someone else they said it could

be a trauma or something else – how do you know if their assessment is the right one?”

159

‘Some service standards would be extremely helpful for each CAMHS which are published, e.g. waiting times

should be no longer than x weeks, analysis of complaints and feedback, you said we did, friends and family test,

evaluation and satisfaction scores and comments, outcome results. It would help with transparency and

also help to build confidence.’

160

‘Our experience of CAMHS has been that the system is difficult to access and, when accessed it is disjointed and

frustrating. It seemed to us that the focus was on the appointment and then being sent away until you hear

about the next appointment – often months later.’

161

‘Some service standards would be extremely helpful for each CAMHS which are published, e.g. waiting times

should be no longer than x weeks, analysis of complaints and feedback, you said we did, friends and family test,

evaluation and satisfaction scores and comments, outcome results. It would help with transparency and

also help to build confidence.’

162

“My initial experience of CAMHS for the first few months was like this:

I had to battle to get my daughter there, we would then be told there is no slot for therapy or family therapy,

however her weight is still decreasing so I will see you in a fortnight.

"Today was a battle to get her here and it's going worse she will shut down so then what do I do?"

"Take her to A&E."”

163

Theme 22: Transitions

164

‘At the age of 16 the CAMHS service discharged my son as they don’t work up to the age of 18 – again this is

contrary to the advice from the specialist child & young Person Gender Idenity Service who do not do generic

therapeutic work, purely concentrating on Gender Dysphoria and the network model around the child. I am

sure you can appreciate there is a complexity about gender identity for children and it can be a huge risk; we know discrimination is a huge factor which can lead to mental health problems so it is really important that CAMHS should continue to support the child but they

would not accept this – so now my child has no mental health support.’

165

‘There is an urgent need to tackle the issue of young people falling into a void at the age of 16; or in best case scenarios, at 18. Is the age limit dependent upon where

you live? Are Adult mental health services geared to take 16 years old and if so why did they not take my son? And why did

CAMHS discharge him saying there was no more they could do?’

166

‘One area has developed a really good Youth Mental Health Model. My child could benefit from that, and it

goes up to the age of 25. They do things like specialist support to do assessments which are probably often overlooked in many young people, trauma, eating

difficulties, anxiety, low mood, neurodevelopmental, speech and language difficulties etc. These are often the

things which are hidden which cause distress and stop people getting jobs. It’s not fair that they are so

disadvantaged. These models are housed in the youth voluntary sector so there is no stigma, there is holistic

support with input from Adult Mental Health and CAMHS to support the staff in their work.’

167

Theme 23: Outcomes

168

“We do need to have real practical outcomes in CAMHS and I guess we need more discussion with CAMHS about that as to what is realistic. Outcomes they currently use

are numerical which are often meaningless, no explanations are given and acronyms are overly used -

they are almost like speaking in a foreign tongue.”

169

‘My son was offered a 6-8 week program for anxiety. There was no diagnosis of a mental health difficulty.

They worked on the CBT model, his father attended each of the sessions with my son and we supported him to do his CAMHS homework. My son wanted his Dad with him.

After 6 sessions he was discharged, you can see an improvement in my son, however he was discharged during the school holidays so we’re yet to test if the interventions have worked. He is now much more

positive and over the school holidays he was able to see friends and go out so that is an achievement; that and

going to school are desired outcomes.’

170

“I asked for a second opinion and was told I could have one but it had to be from someone within the same team

- what's the point of that, it needs to be more independent.”

171

“How are CAMHS evaluated? How are efficacy and successful outcomes measured?”

172

“More money to make it an equal service to physical health and that money needs to be invested in:

-Reduction of waiting lists-Increasing the skills set of the CAMHS staff to provide them with greater skills and knowledge on issues such

as:Anxiety, Trauma, Eating Disorders, Emotional disorders, emerging personality disorders, ASD, Self Harm, ADHD,

Sensory Processing Disorders, CO- morbidity-More therapists to cover the above, and family therapy

- Using different interventions including web technologies- Teaching young people and parents resilience and how

to look after their own mental health-Ensuring schools really embed Mental Health and work

much more closely with CAMHS.”

173

“- It needs children and young people, parents and carers to have greater involvement within the services

and with the decision making of how they are developed- It needs to concentrate on outcomes

- It needs to really understand the lives of children, young people and their families (there are some very

grave issues in society which do have a huge impact on children and young people’s mental health).”

174

“CAMHS should not always be about the diagnosis, sometimes life events can be worked through with

CAMHS support and that is really helpful, but I guess that is getting less and less now as the priority seems to be

more about diagnosis.”

175

“Nightmares to stop, anxiety to decrease, low mood to lift, an increase in friends, coming out of their room, behavioural improvements, better attendance and

success at school, greater cultural understanding and acceptance, self injuring stops, happier, more

communicative, more resilient, better able to deal with loss, experiencing joy in the family.”

176

“My daughter has been in CAMHS a while now. Aged 17, her problems don’t look as though they are going to

clear up – and without a diagnosis, will she get help from Adult Mental Health? Whilst CAMHS has been a good

service at times, sometimes they do not seem to see the whole picture.”

177

“There is still too much emphasis on outputs in CAMHS, how do these pass the ‘so what test?’. We need much

greater emphasis on outcomes.”

178

Theme 24: Commissioning

179

“It would be really useful if we could see the Commissioners of CAMHS as they could listen to us and

hopefully bring about some change in CAMHS.”

180

“I am interested, as I believe there is an urgent review required of both the current services and the services

that are needed, and subsequent change is long overdue. The service simply has to improve, and

quickly.”

181

“I would like to know who is responsible for assessing the service offered. Who monitors standards? My child will be

under CAHMS for a considerable amount of time, and I would like to be party to and be able to witness a change

for the better. I want my child to receive the best possible treatment, and not be grateful for a second rate

service. My experiences include: •Poor communication and liaison between medical and

psychological services• Unclear routes of access• Conflicting advice offered

• No support during a period on a waiting list. The current triage service in operation fields calls but gives

no advice for supporting a child• Insufficient information given to GPs about the referral process; the system is not ‘joined up’. Effectively parents act as a liaison service between GP and CAMHS, rather

than the other way around• Long waits in waiting rooms for children prior to

appointment.”

182

“These have not been explained to me, they may have been explained to my child, but not to me – I just

understood that a CAMHS worker needed to complete them.”

“You have just explained ‘ROMS’ to me and why they use them. I can't recall this ever being explained and so

‘ROMS’ has never made much sense to me in the past - it just felt like more paper filling"

183

Theme 25: Confidentiality vs Information sharing

184

“If parents are separated, how much to disclose? I do think this needs to be explored some more, questions

should be asked by CAMHS - Have you involved the other parent? If yes, are they supportive of the decision? If no,

is it being kept from them – this may need to be investigated further if there is no evidence to suggest that the other parent knows. But above all they need a clear policy which is about contacting both parents and that needs to be explained to the parents, it’s no good beginning on this and then for it to creep up at some

point, it needs laying out at the beginning. Within that, risk needs to be mentioned and examples given as to

what could be shared with the other parent – I just think parents need to know this, especially if both have

parental responsibility.”

185

“Parents could really help in the recovery of their child if they were included in the care plan.”

186

“Whilst me and my wife had separated we had joint parental care so CAMHS could have told some of the

situations going on at critical times – I understand that children want some things kept from their parents but

when it starts to become big issues there could be significant risks, especially taking anti-depressants,

suicidal feelings, self harm – then CAMHS and the family could do more – but both parents need to be told and

more support needs to be brought in.”

187

“Yes there are different sets of parenting styles between me and my first wife, but CAMHS could work with those parenting styles and get parents working in harmony

more in relation to parenting style and consistent messages, strategies that can help – they may have insight and guidance which could support parents in

helping them parent their children.”

188

“Confidentiality doesn't mean exclusion (e.g. not telling the parents anything), family participation won't

compromise confidentiality.”

189

“I would get a chance to say how the week had been and then leave so my child and the therapist could be alone – it was a broad overview I was told, there was no risk or

child protection issues. I only wanted to know what I needed to know and not the actual discussion with the counsellor, and I don't know that to this day and that is

right -my son was 9 at the time, maybe some things should only be told to a parent on a need to know basis -

my son understood that.”

190

Theme 26: Training and sharing experiences

191

“Relationships between CAMHS and Social Services is not good, it could also be better in education - CAMHS need

to be in every school.”

192

“There should be more overlap with schools. CAMHS could have a greater presence in schools, be on hand to support children who need it and also support the school

in helping the children understand mental health.”

193

‘I would be prepared, and am sure would be able to get other parents who have children who have gender

identity issues, to work with CAMHS to raise awareness of this and to tell them what our experiences are like.

Perhaps they need to hear more from us, but in order to do that they need to create the opportunities so we can

work together.’

194

“Schools, CAMHS, the family and GP’s should all work together.”

195

“My daughter had the same therapist and it was consistent. They also talked to us. Everyone should be

able to get that same service.”

196

Theme 27:Recruitment, Appraisals, Staff Training

197

“At the front door of CAMHS they need staff with sound clinical knowledge, expertise and wide ranging

experience across various conditions children and young people experience , so that they can identify the

complexity early on, its too crucial too get it wrong from the start, staff can go off with their limited knowledge,

offering the wrong interventions for the wrong condition or not seeing the difficulty. The former gives me a

confidence that they are going to get it right.”

198

“I was told on one course that ADHD was an excuse for lazy or poor parenting - it made me feel incompetent.”

199

‘The CAMHS team had only very basic awareness of Gender Dysphoria in Children. This is an issue which

needs addressing as I know there are more children and young people coming forward with Gender Identity as a presenting problem and if the child feels that the service

is not culturally sensitive to this then they will not disclose and obviously they are more prone to self harm

and suicidal thoughts. CAMHS need to be really accessible to this group of young people and their

families.’

200

“Because Psychosis is so rare in younger children, Psychologists and Psychiatrists in CAMHS almost don't

want to open their eyes to it - therefore it must be 'something else.’”

201

“Autism is not a spectrum it's more of a galaxy - many children are not so linear, they all have different

combinations and sometimes staff struggle with that, making diagnosing longer.”

202

“Children not allowed to have Psychosis before the age of 14 (age criteria of Early Intervention in Psychosis)”

203

“Tiers 2,3 and 4 must be a Parent/CAMHS partnership - it needs others within the partnership but centrally it needs

parents.”

204

“My child’s behaviour was blamed on my child in that way he was seen as ‘bad’ - he was told he was

manipulative and that he had to behave. Not until a lengthy battle did an assessment show that the

education style was not right for my child and then the situation improved. We never received an apology - I

think they had written us off.”

205

“I knew my child had difficulties (later confirmed as neurodevelopmental) but that is not the reason I went to them. My 9 year old son had a very low mood and was

suicidal but they just kept talking about putting him on a separate two year waiting list. They’ve done nothing to

help with his low mood or feelings of suicide – he wanted to die.

He would have responded to play therapy or other interventions but they didn’t try any of those, and after 4

sessions we gave up. They’ve done nothing and I felt really judged.”

206

“I wish the CAMHS staff I had seen knew a bit more about co-morbidity, especially mental health implications with things like ADHD and Autism etc. Pediatrics will say that is a CAMHS issue and CAMHS will say it’s a pediatric issue, but that is not helpful to me or my child, we need

support around the mental health problems.”

207

“At our first appointment with CAMHS, the worker opened the conversation with ‘I dread seeing someone

like your son with Asperger’s Syndrome, as I know nothing about it’. That really filled me with confidence…

They then went on to say that my son ‘looked so normal’.”

208

“Why does self injury seem to be treated as a separate issue, isolated on its own? I've had three lots of

conflicting advice – none of which seemed to explore the underlying problem as to the reasons why she does this.

I do think families need support on this issue, such as how to deal with it and how we can cope with this in a

different way.”

209

“Sometimes, I think they make a judgment about our life without knowing the facts – CAMHS need to understand

what our needs are.”

210

“Some of the CAMHS staff have got great specialism’s around different age groups such as the under five’s, but then they may struggle with certain age groups such as

teenagers. Again some specialise in certain conditions such as

trauma or eating disorders which is good, but then that creates long waiting lists as there are not enough of the

specialists to go around. Also I guess there are not enough specialists around each age group and conditions, and at times you then end up seeing someone less experienced in that age

group or condition. They need more staff to cover those age groups and

specialist conditions.”

211

“Co-morbidity is another issue that many can struggle with if the second or third issue is outside their area of specialism – my child had sensory processing disorder,

low mood, ADHD and anxiety, they really struggled with them, tending to just see one of the issues and not the other conditions and we ended up taking him out of the

service as we had no confidence that they were getting it right.”

212

213

Theme 28: Processing Feedback

214

“The complaints system is not very good, it tends to be PALS which in my area are faceless and then they ask the team and come back with the answer - I don't trust that system they need to think differently about it - we are complaining and not lightly when something has

gone wrong.”

215

“What professionals think people need and want is not necessarily what they do want and need and the only

way to understand those needs are by really listening to us. They can do that in sessions but then in focus groups, and parent groups and other methods - once they listen they can be more responsive and we can work together

in partnership.”

216

“CAMHS have asked me for feedback, but I'm not sure if they’ve done anything with it or even read it! Meetings

like this in my own CAMHS service would be a useful start, as long as they tell us what they are going to do

with the feedback.”

217

Theme 29: Feedback Systems

218

‘At no stage were we asked for any feedback on the service we received. I feel that improving these services is important in helping to remove the stigma associated with mental health issues in young people, and providing

a service that looks at the whole picture.’

219

“At no stage were we asked for any feedback on the service we received. I told them in my final evaluation that it was a “brutal ending”; nobody ever came to ask

why.”

220

“To really engage with parents and carers CAMHS have to want to listen to what parents and carers are saying, listening non defensively with a desire to build bridges, there will be a mix of positive and negative experiences but  their needs to be a desire  to move forwards with

action taken.”

221

“CAMHS workers might think parents are always angry and obstructive but they could harness parents and use 'parent power' and very easily we can all work from the

same side for our children.”

222

Theme 30: Peer Support

223

“Services could collaborate with charities to provide parent support groups, families could be offered that support at a first contact - to be supported by other

people who understand.”

224

“I was very, very, stressed, I needed to talk to someone, not my husband, not my sisters, not my family at all. I

needed a stranger, but time by time she was not stranger. No, she was a very important person in my life, because I come here with my heart full of things, when I go back home, to my house, I feel relaxed because, it’s

like I emptied bit by bit.”

225

“I was very, very, stressed, I needed to talk to someone, not my husband, not my sisters, not my family at all. I

needed a stranger, but time by time she was not stranger. No, she was a very important person in my life, because I come here with my heart full of things, when I go back home, to my house, I feel relaxed because, it’s

like I emptied bit by bit.”

226

“There are some useful parent support groups and parents need to know where they are and get help.

CAMHS could help by signposting these groups -hopefully when they are over the worst they can equally support

those parent groups to help new parents into the system.”

227

‘Over the past two years I have supported my daughter through some extremely challenging situations and I

have learned a lot about the complexity of mental health issues – I would be willing to get involved in a parent support group as I think this is one thing which would

really help parents.’

228

“I feel extremely passionate about developing more support for parents who have children or young people with mental health problems. Over the past two years I have supported my daughter through some extremely

challenging situations and I have learned a lot about the complexity of mental health issues. Face to face

specialist parenting support and information around young people’s mental health issues is not readily

available, but so needs to be.”

229

“You could have experienced parents acting as peer mentors to other parents who are using CAMHS for the first time - it's an unbelievably stressful time supporting a child with a mental health problem and that's enough to deal with, and then you have the added pressures of having to wade through CAMHS. Other parents could

help, and in some instances this does go on in the voluntary sector.”

230

“I would be willing to support other parents who are new to CAMHS. I'm also sure there are others in this room

who would also do that, we have a lot of experiences and could put that to good use.”

231

‘I did ask CAMHS if there was a parental support group and it was misinterpreted as a parenting course, I

declined this as I deliver the Parenting course and I knew that the course would not be relevant. It was not about parenting, it would have been ineffective; we needed specific support. I guess one benefit would have been meeting other parents who use CAMHS and that would

have been helpful to us as we could have gotten support from them. There is nothing in our area for a CAMHS parental support group so me and a colleague are

looking to see if we can develop something, hopefully with the support of CAMHS and Healthwatch.’

232

“I do talk to other parents informally about CAMHS, it would be good though if this was properly organised as a peer mentoring scheme or support group, as sometimes

it becomes a bit too much.”

233

“Sometimes I will use Facebook and other sites to ask other parents for help and ideas, there are lots of those

sites about - it would be good if CAMHS had one and then we would know we were getting reliable support.”

234

Theme 31: Parent/Carer Engagement Strategies

235

“I submitted evidence to the CAMHS select committee which I was never asked to present and nor can I recall

parents giving evidence - do they want to know what we think?”

236

“When expressing views, parents have to be so measured and curb emotions to be taken seriously.The minute emotions are shown we are not taken seriously as it is considered an emotive response.

How do we move forwards with that attitude?”

237

“I attended a parents course but the person did not understand our situation. My child’s distress was not down to my parenting but was due to bullying. That

course completely undermined me and made me feel like crap. Now I look back and wonder, if CAMHS had

really listened and understood, would they have sent me on it?”

238

“I have expressed my concern that my child will say anything to stop going to CAMHS, so they can get

discharged - but I saw no change in her especially when it came to eating or not eating and harmful behaviours, but my child was discharged without any discussion with

me and I was put back in the same boat”

239

“I received two emails about this focus group, one from the Parent Partnership and the other from Healthwatch.

Why didn’t CAMHS tell me about it?”

240

‘I feel extremely passionate about developing more support for parents who have children or young people with mental health problems we need to hear more of

the parents’ voice and there should be more opportunities for this to happen. I know I’m not the only

one, why don’t they ask us to help? They have our contact details, they could send invitations through: Healthwatch, Parent Partenrships, Childrens Centres,

Foster Care Support, Self help Forums, YOS Services for their parents and also use social media.’

241

Theme 32: Parent Focus Groups

242

“Some of the processes used if not considered from a child or family perspective do cause more harm than

they do good, such as greater levels of anxiety.”

243

‘I would hope to bring some positive suggestions to a CAMHS parents participation group, but we don’t have

one. I have had a very poor experience and I would hope to bring ideas to the table of how we can develop it

together and make it more responsive to our needs.’

244

“I have been offered 3 parenting courses focusing on family and behaviour, these are not always appropriate

 especially the ones which concentrate on parenting skills, it is not appropriate for a child  who has a

Neurodevelopment condition, we need courses which are more bespoke to children with those needs. I sometimes wonder do CAMHS send parents on parenting courses as

it is a tangible offer without really understanding the needs, I could not attend one course, as they sent my letter to the wrong address so I was then discharged

from CAMHS and had to go through the referral process again.”

245

“In our CAMHS you cant be seen without attending a parenting course first and those courses are not all

specialized to specific conditions, yes we can all learn but that does need to be more thought through. I have had to attend the same course twice as I had a further camhs referral, I can't always get the time off work.”

246

“We have parent focus participation meetings and that has made a difference to our CAMHS, they are really listening, and demonstrate it by taking action small steps, which can be built upon and you can see the commitment is there. Parents don’t have time to be

saying things again and again and again.”

247

“Some of the parent focus groups we've had on specific themes are really interesting like developing a Tier 3

plus service or developing a pathway or a strategy. you meet others and learn different things. Bit we need to be

sent the notes and kept in the loop as to what is happening.”

248