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by Dr Janette Gardner

CONTENTS Page

  • Section 2 Factors which may Influence Obtaining of information

  • Section 3 Consequences of not Getting Information
    • 3.1 What were the consequences of not getting that information (to the carer)?
    • 3.2 What were the consequences to the service user of the carer not getting information (in the carer's view)?
    • 3.3 Comment

    • Section 4

      • 4.1 Information from carer to staff passed to service user i.e. carer's confidentiality breached
    • 4.2 What were the consequences to the carer of breaching carer's confidentiality?
    • 4.3 What were the consequences to the service user of breaching carer's confidentiality (in the carer's view)
    • 4.4 Comment

    • Section 5 Good Ways of Getting Information

    • 5.1 For those who got information without difficulty, what was good about that?
    • What kind of information do carers want?
    • 5.3. What is the best kind of way of communicationg information to the user?
    • 5.4 How did carers find out about NSF(Scotland)?
    • 5.5 Comment

    • Section 6 Carers Further Comments


      • Who are Carers/Supporters?
      Carers may be relatives, partners or friends i.e. anyone who has had to change their lifestyle in order to care for and take responsibility for another who is experiencing mental health problems.

      Carers do not necessarily live with the person who is ill.
      NSF(Scotland) includes as carers those who, because of age, illness or living at a distance do not contribute to daily support but who do know the history and are still concerned for the person who is ill
      "Supporters" is an alternative name for "Carers" as some families and service users do not identify with the name "Carers".

      NSF(Scotland) Survey
      NSF(Scotland) has been informed on many occasions by its members that they cannot obtain information about their relative who is mentally ill and that staff particularly in hospitals will not talk to them. To find out just how common this was, we sent a questionnaire on the subject to carers who were either associated with or were members of NSF(Scotland). The results of that survey are shown below.
      This is not, of course, a random sample of Scottish mental health carers but they are carers whose relatives are at the most severe end of the spectrum of mental illness.


      Summary of Findings

      1. There were many instances of good practice with carers being able to discuss the issues with professional staff. However, nearly 2/3 of carers had difficulty getting information and nearly 1/3 got no information at all.
      2. There is no framework or protocol to ensure that carers do get information, albeit indirectly when the service user does not want them involved. The giving of information seems to be on the seemingly arbitrary decision of the individual staff member.
      3. When the rule of 'Confidentiality' prohibits information sharing, it is rare for carers to be pointed in the right direction to get support e.g. to another carer or organisation such as NSF(Scotland).
      4. The difficulties of carers getting information were outlined. These included unhelpful staff attitudes and confidentiality.
      5. The consequences of not getting information were serious especially the possible harm to both the user's and carer's well-being and their long-term relationship.
      6. For the small number of carers whose 'confidentiality' was breached i.e. information from carer to staff was passed on to the user, the consequences could also be very serious..
      7. Carers needs are for the information which will help them to support their relative in the long term. Carers felt that several methods of imparting that information could and should be used.



      SECTION 1 RESPONSE FROM CARERS

      This paper refers to carers and their relatives, the service users. The term 'relative' is used for service users no matter what the relationship may be.

      1.1 Background of respondents
      The relationship between the respondent and the person (service user) who was ill was first requested. Total number of respondents was 82
      Father 12%(10)
      Brother or Sister 5%(4)
      Mother 55%(45)
      Son or Daughter 7%(6)
      Father and mother jointly 5%(4)
      Friend or Neighbour 6%(5)
      Partner 10%(8)

      Does the user live at home with the carer 80 replied.
      39% (31) lived at home while 61%(49) did not.

      How long had the sevice user been ill? 3 carers looked after 2 service users, giving 83 replies here.
      1% (1) had been ill for less than 6 months
      13% (11) had been ill for less than 5 years
      86% (72) had been ill for more than 5 years


      1.2 Getting Information about the illness
      Did carers manage to get information about the illness? 77 replied
      69%(53) managed to get information
      31%(24) did not.

      How did it come about that they got information? Of those 53 respondents, some gave more than one reply .
      34% (18) were invited by staff to a meeting
      66% (35) asked to speak to a member of staff
      17% (9) got information in some other way from:


      1.3 When did these people get information about the illness?
      Of 51 respondents, some gave more than one reply.
      31% (16) got some information on admission to hospital
      57% (29) got information at the time of diagnosis
      10% (5) got information at the time of discharge
      39% (20) got information at some other time.

      Of the 21 carers who gave written comments, about one half were reasonably satisfied about the way they were given information. Some had regular meetings with staff or spoke on the phone. Others found questions answered by staff when they asked.
      A few carers had a chance to get information from the psychiatrist at a meeting when their relative (service user) was also present although this was not always satisfactory.(see para 1.5)
      The receipt of information may depend on diagnosis being given and carers report waiting for various periods from 1 week to 4 years. Before diagnosis even although mental illness is recognised, carers may get no information or only limited amounts.

      One carer said: 'The illness was evident for 2 years before diagnosis. After diagnosis, the consultant was very helpful as were senior hospital staff later on when we requested information.'

      A third of respondents only got information if they asked, when they insisted and persisted.


      1.4 Difficulties in getting information
      Did the carer have any difficulty in getting information 78 replied
      62% (48) had difficulty in getting information
      38% (30) did not

      When the replies to this question were put alongside those to "did carers manage to get information" (para 1.2 ) it was found that of 75 who answered both these questions

      37% (28) got information and had no difficulty in getting it
      32% (24) got information but had difficulty in getting it
      31% (23) got no information and had difficulty when they tried



      1.5 What were the difficulties?

      44 gave written replies
      Difficulties with some staff in hospital were reported by more than half of these respondents. Difficulties included staff not speaking in plain language to carers or staff were too busy or there was no private room for discussion or staff appeared to have an unhelpful attitude to carers.

      The next difficulty concerned the unwillingness of some consultants to give a diagnosis and put a label on an individual. Almost half of respondents reported this.

      • staff were reluctant to put a name on the illness or help with information, maybe because my son was only 17 at the time. I know now that perhaps it was a very careful decision
      • difficulty getting diagnosis, advice on medication and changes. Total lack of information on sectioning
      • for the first 3-4 years , I was not able to get information about diagnosis.. I found hospital staff did not communicate with each other, and information was not passed on or back.

      And in some cases, the carer found out only by chance that their relative had schizophrenia

      • our son had a major psychotic episode at 17, and spent 5 months in hospital with depression. Schizophrenia was not suggested to us but we gradually came to realise that this was the main illness
      • we did not know that it was schizophrenia until the GP mentioned casually to my son that he was schizophrenic.

      While about 10% respondents found their GP helpful,

      • GP was excellent, stressing the importance of medication and that there was no cure.
      - about 20% found difficulties with GPs in the early stages and in giving back- up to families
      • in teenage years 14-16, my daughter was very difficult. GP said it was only teenage rebellion but I thought that there was more to her behaviour
      • when I tried to discuss my wife's illness with nurses, and told them that I had schizophrenia, they ignored me. The GP could have helped me with this
      • the advice from the local GP practice was "get your son to come to surgery and discuss this illness". My son refused to accept he was ill in spite of the symptoms which were glaringly obvious and had been reported to the GP. No other advice was offered.
      The issue of confidentiality was mentioned by about a quarter of these respondents e.g.
      • because my son said he did not want me to have any details and was refusing to see me, his consultant and the staff said they were unable to give out any information whatsoever
      • my parents were told that they were not entitled to know about the release of my brother who was over 18. There was one-way communication only
      • when the nearest relative was not willing to take an interest, there was no effort from the staff to talk to other interested family members
      • when I wanted to tell staff in hospital about a physical health problem of my son, he was wakened to ask permission for the ward doctor to speak to me.
      Several carers mentioned difficulty speaking to the psychiatrist without the service user being present, thereby possibly ignoring the sensitivities of both users and carers.
      • I was not given a private interview with staff and found my son's presence inhibiting. There were many questions I wished to ask such as "will he ever recover from this". I felt that there might be answers that I didn't wish him to hear
      • We were not given verbal information, nor told what was wrong. We were given a typed sheet in front of the patient who had no information himself and wondered about the sheet so we told him a white lie. There seems to be no understanding by the staff of the patient's suffering
      One other difficulty for a few carers was in not understanding the system
      • not knowing who to ask or what to ask
      • not knowing who one was talking to, whether they were staff or patient

      1.6 When did these difficulties arise

      49 responded and some gave more than one reply
      53% (25) had difficulty when the user first became unwell
      53% (25) had difficulty on first admission to hospital
      28% (13) had difficulty at the time of diagnosis
      32% (15) had difficulty at discharge
      43% (20) had difficulty at some other time as follows:- 26 written replies

      From personal testimonies, NSF(Scotland) know that the period after discharge is of critical importance if the user is to settle back well into the community and the lack of information for carers at this time is quite unacceptable.
      • professional staff would not agree to caring for a patient without knowledge of the symptoms of the illness, the medication and side-effects and what to do in a crisis. Why should carers have to care with no information or support at all?

      1.7 What reasons were given for not giving carers information?
      48 people responded, some with more than one reason
      40%(19) said no reason was given
      40%(19) were told it was too early to give a diagnosis
      40%(19) were told "confidentiality" was the reason
      21%(10) were given other reasons



      1.8 Comment
      37% of carers did get information without difficulty and the good practices that were used by staff are discussed in SECTION 5.
      A high proportion, nearly 2/3 of carers had difficulty getting information and approximately half of these got no information at all from professional staff. These are carers who cared enough to have the courage to go on asking and/or to try to gain understanding and information from NSF(Scotland). There does not appear to be any protocol or structure to help them and to ensure that they get some help, either from staff or from a voluntary organisation such as NSF(Scotland).
      Pre-diagnosis and pre-hospital admission were particularly difficult times and lack of support at these stages undermines the carer's self-confidence and their ability to go on caring. While NSF(Scotland) understands the difficulties of diagnosis and admission to hospital, we know, from carers who have been shown consideration by staff, that some support and information can be given without breaching users' 'confidentiality'.
      Some users and carers found out about their diagnosis accidentally and that cannot be right. Once the diagnosis is known to the user, it must surely be explained to him/her and also to the carer if the user is willing.

      Factors which can cause difficulties, such as staff attitudes and confidentiality, are dealt with in the next section.


      SECTION 2 FACTORS WHICH MAY INFLUENCE THE OBTAINING OF INFORMATION

      2.1 Confidentiality
      Confidentiality is an issue reported by many carers throughout the questionnaire (para 1.6 and 1.7)
      This was sometimes given as a reason for not talking to the carer, without any explanation of what it meant. Two 'long-term' carers commented that

      It was felt that 'confidentiality' was just an excuse not to talk to relatives and a bar to giving any information. The service user may not even have been asked if s/he was willing.
      • refusals of help and information to the carer created feelings of anger and hostility which was reflected in the way I treated him
      • just basic information, such as 'better', 'worse', 'just the same' is preferable to being told "we are unable to divulge any details regarding this patient as it is on his request that I am to be told nothing"
      • I could have been pointed towards NSF(Scotland) a long time ago when my son first said I was not to have information
      • I understand 'confidentiality' but I feel it is sometimes used as an excuse. Do I have no rights?
      There is a lot of general information that need not be confidential and staff could negotiate with the service user to enable them to give some guidance to carers.


      2.2 Staff Attitudes
      Many carers were quite clear that individual nurses could be very helpful but others ignored or dismissed them. In addition, several found one consultant was ready to answer questions on many occasions but a new consultant was distant and became more so. That could hardly be the fault of the carer.


      2.3 Has the situation improved over time?
      As it was of interest to find out if there had been any improvement over the years in the giving of information, the replies of carers whose relative had been ill for less than 5 years (11) were compared with those whose relatives had been ill for more than 5 years (72).

      29%(21) of the 72 long-term carers group and 9%(6) of the 11 shorter term group got no information and had difficulty trying.
      32%(23) of the long-term carers group and 45%(5) of the shorter term group got information without difficulty.
      This might suggest that information is now being given more freely and widely but the sample size of one group is too small to be sure of this. It is to be hoped that this trend will prove to be a real and settled improvement in communication.

      Comments from a few carers indicate that it was much better previously than it is now.

      • 4 years ago I had meetings with the psychiatrist, but not now
      • over 20 years ago there was no difficulty in talking to psychiatric staff
      Over the years, individual carers learn something about the illness and its management, some from hard experience. They become more knowledgable and know better what to ask .
      • I had to find everything out for myself about my son's illness. I learned the hard way.



      2.4 Which relative of the service user is involved
      Which relative is involved in getting information.
      27% Mothers (12 of 45) and 10% Fathers (1 of 10) got no information and had difficulty trying.
      The samples of the other groups of carers were smaller than those of Fathers.
      The figures might suggest that fathers do better than mothers at getting information but again the sample of fathers is too small to give a clear indication. One carer suggested that staff seem to find it easier to be open and candid with relatives who are less close to the service user.


      2.5 Whether service user lives at home
      Living at home with carer. 

                                      At home 31           Not at home 49
       Carers got information      74%(23)                59%(31)
       
      Carers had difficulty
       getting information         39%(12)                25%(12)

      More carers whose relatives lived at home did get information but more had difficulty than those carers who lived apart from their relative.


      2.6 Comment
      The two main factors which emerged as contributing to the difficulties of carers were 'staff attitudes' and 'confidentiality'.
      While carers may seem 'over emotional ' and 'difficult' to staff, it is obvious that many staff are able to communicate with carers in a kind and considerate way. It appears to carers that information is given to them on the whim of an individual member of staff. Carers hope that changes in unhelpful attitudes will allow staff to see carers as potential allies, not as nuisances.
      It is clear from responses that those carers who are treated with kindness and consideration, may be more ready to accept that sometimes there are no answers to their questions.

      The use of the term 'confidentiality' to deny carers any help or support must surely be wrong. When users do not want carers to be informed, surely carers could be pointed in the direction of another carer or an organisation such as NSF(Scotland) for advice and general information.
      When service users deny the carer the chance to talk to staff, that must be respected, but, if they are asked again later and reassured that their private confidences will not be disclosed, they may well change their mind and allow the carer some minimum information. Certainly, at discharge, carers should get information on a 'need to know' basis, just as staff in the community do, with a basic minimum of telephone contacts for problems and emergencies.
      The kind of information that is needed is discussed in SECTION 5


      SECTION 3 CONSEQUENCES OF NOT GETTING INFORMATION

      3.1 What were the consequences of not getting that information ( to the carer)
      There were 43 written comments.

      Firstly, most expressed feelings of hopelessness, fear and frustration.

      This lack of information made more than half of the respondents feel unable to cope
      • worrying because I didn't know how to help
      • ignorance and inability to cope with the situation
      • in great distress because of lack of advice on how to treat him at home, what kind of behaviour to tolerate, which early warning signs to pass on
      • leaves you feeling very confused as to how to address his illness
      • we were put under even more stress by not knowing how to cope with the situation, and this only caused more anger and alienation from professionals.
      Family conflict was induced by ignorance of what was happening to the patient
      • conflict in the family added to the distress of our sister's illness, an emotionally upsetting time
      • frustration at not getting help and understanding as our daughter's condition worsened. Her bizarre behaviour made it increasingly difficult to cope and my husband had to move out because of her rages and violence towards him
      • led to fear, isolation, family tensions, no holidays, lack of interaction within the family
      • conflict in the family because of divergent views about coping skills, stress, isolation.
      Lack of information produced feelings of guilt in a few carers
      • makes me feel very guilty. There is no diagnosis and it was once hinted that my husband was trying to escape from me and a 'bad' marriage
      • terribly upsetting. I felt guilty about my son's illness, very emotional and didn't know how to react
      • feelings of annoyance frustration, guilt. Initially we parents were being blamed for misbehaviour which turned out to be schizophrenia.
      These feelings can make carers want to give up. As one respondent wrote
      • I couldn't take the hostility from the patient's paranoia or from the staff. I decided if this was my life then "no thank you" and took to sleeping pills and a bottle of wine.
      A small number of carers commented about their loss of confidence in professionals' ability
      • ever-increasing anxiety about the welfare of our son, lack of confidence in the competence of those responsible for his care and anger arising from their arrogance
      • sadness and distrust leaving me with the impression that there was little communication between team members themselves and their patients
      • suspicion of the validity of treatments
      • don't know if he has an appointment to keep or activity to go to as staff don't know till last minute. Found one activity to be a day spent in smoking room. I could do better myself.

      3.2 What were the consequences to the service user of the carer not getting information (in the carer's view)
      There were 38 written comments. Many carers reported that the lack of information had made them treat the person who is ill quite inappropriately

      • when I am overwhelmed by the illness and my lack of information, his care from me is not so good as it could be
      • the family's conflict did not help our sister as the fear of the unknown, the guilt we felt, spilled over on to her
      • the user was not given as good support by the family as could have been the case if we had been better counselled
      • we made unnecessary mistakes as we did not know what to expect and how to deal with him properly
      Expectations of the user's ability may be completely unrealistic in that carers may encourage their relative to return to everyday living too quickly.
      • He was not happy after discharge, living at home. We were always trying to occupy him and give him enjoyable experiences. It would have been better all round if we, his parents had had more information which would have led to greater understanding.
      Although there may be some hostility and blame between service user and carer before hospital admission, this is exacerbated by lack of information as reported by a quarter of repondents
      • staff said it was vital for daughter to have ECT quickly and we agreed although we had no understanding of what the treatment was She said it made her worse and blamed us, the parents
      • my relative was angry with us and the whole system and we had to reduce our visits to hospital
      • exacerbation of his condition. Feelings of isolation and alienation from the family
      Relationships can break down when the family have no idea how to deal with the situations
      • my inability to resume a family relationship after what had happened
      • refusals of help and information to me, the carer, created feelings of anger and hostility which was reflected in how I treated him. The relationship broke down significantly
      The nightmare for both carer and user continues longer than necessary. As one carer said
      • Help and information from the GP might have helped to resolve the situation much sooner and in less traumatic circumstances.
      There can also be less co-operation from the family in monitoring care and treatment
      Relapse can more readily occur if information is not given to nor accepted from the carer.
      • failure of medical staff to accept our information allowed the situation to develop to an acute stage where rehospitalisation became necessary.


      3.3 Comment
      The consequences of not getting information are many and serious. The strain on the relationship between carer and user is much greater when the carer has no understanding nor information on how best to care for their relative.
      The carer's lack of self-confidence in dealing with problems may help to undo all the good work that the psychiatric staff have done for the service user . Moreover, this lack of support for the carer undermines their ability to carry on caring and this will also affect the service user's mental health in both the short and long term.


      SECTION 4 CARERS' CONFIDENTIALITY

      4.1 Information from carer to staff passed to service user i.e. carer's confidentiality breached
      Has any information about the (service user) from the carer to the professional staff been passed on to the service user without the carer's consent There were 78 responses
      24% (19) said "Yes"
      36% (28) said "No"
      40% (31) did not know.


      4.2 What were the consequences to the carer of breaching carer's confidentiality?
      Of the 19 carers whose famly experienced this, 14 gave a written comment.

      When the carer and user normally shared information, then there is a chance that there will be no adverse consequence.

      However, some families found that the user reacted to what s/he thought was a breach of trust


      4.3 What were the consequences to the service user of breaching care's confidentiality (in the carer's view)
      There were 11 written comments:

      Sometimes relationships break down, perhaps only for a period, but this can harm the service user, who might have no other friends and no one to help with everyday tasks.


      4.4 Comment
      While carers do appreciate that information which they give to staff can be very important to the staff's knowledge of the individual, they expect that their information will be used sensitively when staff talk to users and with an awareness that it might cause resentment or worse between user and carer.


      SECTION 5 GOOD WAYS OF GETTING INFORMATION

      5.1 For those who got information without difficulty, what was good about that?
      35 people responded. Some gave more than one reply

      1. 80%(28) were invited to speak to the consultant psychiatrist
      2. 54%(19) were invited to speak to nursing staff
      3. 69%(24) were able to go back and ask further questions
      4. 14%(5) were offered verbal and written information
      5. 14%(5) found other means helpful


      5.2 What Kind of Information do Carers want
      What kind of information would the carer find most useful 61 respondents made written comments.

      Early on they wanted strategies for avoiding confrontation, what to do when threatened, reasons for bizarre behaviour.

      Most carers wanted diagnosis if possible, at least some idea of the nature of the illness and its treatment

      They wanted to know the effects of the illness on day-to-day living, how to treat the user in everyday life so as to contribute to his/her better mental and physical health
      • how to occupy his day, how to deal with his addictions which he used to quieten "voices"
      • that tears and emotional scenes are very bad for him and have to be avoided
      • ways of communication, how to/not to respond
      • how to handle a crisis situation, how to care for a patient out on pass
      They want to know the prognosis and expectations of future outcome for
      their relative so that they do not demand too much from him.

      Many wanted to know what the psychiatrist hoped to achieve so that they could try to encourage the service user to comply and so that they could help to monitor the course of the illness and the medication.

      All carers need to know where to get help

      • knowing that I can contact GP practice
      • where to find others in same circumstances so as to exchange information e.g.NSF(Scotland)
      • helpline to talk out my feelings
      • kind of information from chatting to other carers and sharing experiences, sometimes at small groups chaired by a consultant,
      In fact some carers found out for themselves from reading books, joining support groups. It would have been much better if they had been accepted as allies by the staff at the beginning and not as intruders.

      People need to know that there is at least a chance of improvement,.

      • we got information from NSF(Scotland) leaflets, we started to feel less isolated and dared to hope that the patient might get help eventually
      • support group was very helpful on the non-clinical side. It was reassuring to know that there was a possibility/probability of improvement.
      One carer summed up what she wanted
      • understanding of his hostility, his paranoia, a sympathetic non-blaming approach, a person to contact to express concerns to, to be able to talk through what is happening so that you can understand it. With understanding comes empathy and compassion, coping strategies for both of us, insight for both of us.
      and another carer summed up what she felt the service user needed from her
      • love, companionship, stable routine, occupation.



      5.3 What is the best way of communicating information to the carer
      How should that information be imparted Some of the 69 respondents gave more than one reply

      1. 70%(48) would like informal discussions
      2. 59%(41) would prefer arranged meetings
      3. 45%(31) would like leaflets supplied by the hospital
      4. 29.%(20) would like an information course run by the hospital
      5. 49%(34 )would like an information course run by an independent organisation e.g.NSF(Scotland)
      6. 10%(7 )respondents had other suggestions



      There were 19 written comments
      • a whole new approach to change attitudes and assumptions. Friendliness
      • contact with experienced carers
      • someone e.g.NSF(Scotland), available at admission stage, especially if it is first admission to help and support family members
      • each individual treated separately and advice given possibly by hospital. Information from TV programmes is depressing and traumatic
      • information course by outside agency gives wider picture than informal discussion but a session with the psychiatrist should be included
      • I should have been given a leaflet at the first meeting with the consultant and an appointment to come back later to discuss leaflet with a member of staff. This to be followed by an information course which we in fact did not get until 5 years later


      5.4 How did carers find out about NSF(Scotland)
      Very many carers obtained NSF(Scotland) leaflets at some stage and a chance to meet other carers. However, in some case, they heard of the organisation long after they first needed help. Some feel frustrated that the staff did not give them information and did not point them in a direction where they could get general information.

      74 responses, some gave more than one. Carers found out:-
      14%(10) from health care staff in hospital.
      10%(7) from health care staff in the community
      8%(6) from a social worker
      24%(18) from another carer
      51%(38) from others

      Other individuals who pointed the way were a hospital chaplain, a hospital porter, service users, NSF(Scotland) staff. The remainder found out from TV programmes, press articles or adverts, and books about mental illness.


      5.5 Comment
      This section first shows some of the good practice that already exists. It is particularly appreciated by confused and demoralised carers when staff invite them to a meeting and also enable them to ask questions on other occasions. (para1.2 and 5.1)
      It is clear that carers want the kind of information which will best help them to support their relative. They appreciate that a variety of methods can be used to give this to them.
      The carers who got no information from professional staff, did eventually get it from the media, books, other carers and voluntary organisations. The last two also gave them advice and support.


      SECTION 6 CARERS' FURTHER COMMENTS

      The final section of the questionnaire gave carers the opportunity to give further written comment on both good and bad experiences.
      63 carers took this opportunity to comment further.

      Comments about children

      Comments about service users
      • our son suddenly woke up to the fact of being ill for 5 years, becoming scared without anyone to advise him about olanzopine
      • traumatic experience for user as they are completely bewildered and in the dark. They need information too.
      56%(35) had something good to say about the way they had been informed and involved and were appreciative of the help they had received. They praised individual hospital staff, CPNs, social workers and GPs as shown in a selection of good comments.
      • we could not speak more highly of all the care at all levels and how at the same time we got involved
      • we received a lot of help. Doctors and staff did as much as and as best as they could. Very difficult illness
      • one key worker , 6 months on, was excellent, listened to us, and used that information. We felt supported
      • supportive CPN and social worker. My son had a brilliant GP who also helped me
      • a junior doctor once gave me an hour- very informative, sympathetic and constructive. I could have kissed her
      • inclusive discussions with consultants, our son and us
      • good support from Social Work to Police, but it depended on the individual
      40%(25) had criticisms of the way they had been treated Some carers were only partly satisfied, being told only so much or only when the carer asked or after complaint. Some felt they were under scrutiny and somehow to blame.

      Staff were not always willing to listen to parents' points of view. Many carers would agree with the comment of one carer

      • as a teacher, I always found it helpful to listen to parents to get a really full picture of a child and it might help those treating mentally ill people to do the same.
      Comments were made about professionals and organisations.
      On hospital staff
      • mainly good nursing staff and a charge nurse who made himself available for informal discussion but there were some poor nursing staff with dictatorial attitudes, failing to recognise that relatives had a part to play
      • after 10 years, I am still being blocked out. Some consultants are more communicative than others.
      On social workers
      • good support from social workers in hospital but not in the community where they have too many other commitments.
      On a GP
      • I got empathy and help from staff once I felt I could ask questions. My own distress got in the way. My GP could have helped. When I asked where I could get help, he prescribed sleeping pills. On the way information was given
        • staff were very professional and caring but the shock –type advice and information was extremely difficult to take. I feel a more sensitive approach would have helped my son and myself
        On voluntary organisatons
        • I learned slowly with the support of other carers how to deal with the illness through NSF. Since then, I have seen other carers with high EE (expressed emotion) who need counselling
        • I tried over 5 years to get help from the GP. Then I phoned NSF(Scotland), they told me to go to the GP and ask for a consultant psychiatrist to visit . My son was in hospital the same day.

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