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Previous questions to
Professor Elizabeth Kuipers
and Dr Juliana Onwumere
July and June 2011
My friend has alienated everyone by his psychotic and often threatening behaviour and I do not feel safe around him at the moment. He was sectioned for a month and released but now seems worse than before. No one is caring for him and we don't know what to do. Friends don't have the same rights as family to information or advice, but he has nobody else left. This can't be an uncommon situation I'm sure.
You are correct. While these situations are not uncommon, as a friend you have very limited rights or abilities to help using formal systems.
As you do not feel safe visiting your friend (and you are right not to be doing so while this is the case), perhaps you could drop him a note, or send an email or text saying that you are worried about how he is and is there anything you can do that would be helpful, or anyone you could contact for him? Bear in mind that he will have had a follow-up visit from mental health staff (a seven day follow-up is mandatory, particularly as he was sectioned) and the local mental health team or GP may well be in contact with him. This may not be apparent as he may be refusing their offers of help. Also, bear in mind that your own attempts to help may be perceived by him as threatening or intrusive (hence your description of him ‘alienating everyone’).
Does he really have no other contacts? Do you know anything about his family or have any way of contacting them yourself? As his next of kin, they are in a position to ask for help and to get his GP involved in a re- assessment if necessary. If you can contact them and just say that as his friend, you are worried about him, this would be a first step. You may find they are in fact worried about him too, but have not been able to offer help directly either.
If there is no way of contacting his family, and you are really worried that he is unsafe, or being unsafe with others (particularly if you have clear evidence about this, such as when you were threatened) you could try to discuss this, in a factual way with times and dates, with your local adult social services office. They will have someone on duty who should be able to talk to you. Ask for the ‘duty social worker’, and say that you are worried about a friend you think is a ‘vulnerable adult’ (someone with a severe mental health problem who has been recently sectioned would be likely to fit this category), who has just been discharged from inpatient care (can you name the hospital involved?), has no family support that you know of and who you think is not coping well.
However, it may be that you can do nothing more for the moment. Your friend has the right to refuse treatment and contact unless he is an active danger to himself or others. While this is very frustrating, and many caregivers know all about this, it may be the case that you will have to wait until emergency services can be called in.
As a friend you can be most helpful longer term, by trying to stay in contact with him, preferably when he is a bit better. At that stage you might be able to offer him support. This has to be realistic, and at a level you will feel ok and can sustain – perhaps offering to talk to him on the phone, take him out for a coffee or a meal, or accompany him on visits to the GP or hospital. Many people in this situation lose all contact with friends as well as family, becoming extremely isolated, lonely and ‘socially excluded’. If you can manage to remain a friend, who he can perhaps talk to or socialise with, this itself will be valuable.
I have been reading about 'IAPT' services. My daughter has schizophrenia and at times becomes very withdrawn and depressed. Could she get a referral to IAPT services for her depression and if so, who should make this referral? Her care coordinator or her GP?
Increasing Access to Psychological Therapy (IAPT) is a government-funded programme to provide training and supervision for a large number of new psychological therapists who can provide evidence-based psychological treatments (cognitive behaviour therapy-based treatments) for anxiety and depression. This programme is being rolled out across England and Wales at the moment. It has a particular aim to help people back into employment as well as improving their well-being.
At the moment, IAPT is very focused on offering these treatments to people who have anxiety and depression. Typically, those with a psychosis diagnosis will not be accepted for therapy – different expertise is required and IAPT does not offer this. Thus your daughter would be unlikely to receive help via an IAPT referral at the moment. There are plans to extend IAPT services to children, to older adults and to those with severe mental health problems, but this has not yet happened.
For your daughter, you are best to ask her GP for a referral to a local community mental health team, where psychological therapists with expertise in specialised CBT for psychosis are likely to be based. You say she has a care coordinator, so if she is already being seen by a team, her care coordinator should be able to make an appropriate referral. Sometimes there is a long waiting list, but it is still worth a discussion with your daughter’s care coordinator. Preferably your daughter should do this herself, or you should discuss it together with her and the care coordinator to find out what your local options are.
I am having suicidal feelings. My son is supposed to have schizophrenia but is not hearing voices. He has had 15 years of failed treatment, most of them in hospital. He is made to take pills twice a day, is badgered by staff and given injections, which are awful. The side effects are so horrific I cannot bear to read about them. Once he was put on clozapine and nearly died. He has lots of psychological problems that have never been addressed. The family condemns the ‘mad’ person, as do friends etc.
We are very sorry to hear about the problems your son and you have had to deal with over the last 15 years.
Let’s talk about you first. You say that you are having ‘suicidal feelings’. Please go and talk to your GP about how you are feeling. This does not mean just telling your GP about your son’s problems, but about how upset, hopeless and angry you are feeling right now. Suicidal feelings often arise when people feel trapped in a situation they cannot see how to change. Talking to your GP and asking for help on your own account will be the beginning of making at least one change.
Your GP should be able to refer you for some individual help in your own right and this might enable you to stand back somewhat from the current pressures and to take some credit for all the care you have managed to give your son. Secondly, you could ask your GP to refer you for a carer’s assessment from your local social services department. Respite is still available in some areas, despite all the cuts, and it might feel very beneficial to find out if this is a possibility.
If this cannot be done formally, would there be any way you can give yourself permission to take a break from your caring responsibilities for a short while? Can someone else take over, or could your son be left for a day or two, or even for a few hours, while you take some time to look after yourself? Rethink might also have some information about local support groups, telephone advice or other facilities available for you if you contact them directly. You can ring the Advice and Information Services on 0845 456 0455 on weekdays between 10am and 1pm, or email advice@rethink.org
We know from our professional experience, and from the letters that we receive each month, that being a parent of a child with mental health problems can be challenging and there will be times when the situation and your feelings can feel overwhelming. However, it is also at these times when carers need their own support and somebody who looks out for them. Please contact your GP to start the ball rolling in getting the support that you need and deserve. You may find it helpful to also note down the contact details for the Samaritans, who provide 24 hour confidential emotional support to those experiencing despair, distress or suicidal feelings. The phone number is 08457 90 90 90 or you can email jo@samaritans.org
In the longer term, the fact that your son not responding well to treatment is obviously a huge worry. Hearing voices is only one symptom of schizophrenia, so the fact that he no longer has this, or it is minimised by medication, is not surprising. While you are worried about medication side effects and him ‘being badgered’ by mental health staff, I am not clear if your son is similarly concerned. If he is, he should discuss his medication (again) with the mental health team and ask for a medication review (again). It can be helpful for staff to go through his notes and talk to him about which medication he has found least intolerable, or perhaps try a different one, which might work better for him at this stage. Medication is a recommended treatment, and staff will undoubtedly be trying to do their job by giving it to him, but he is entitled to talk with them about his view about side effects and which medication he would prefer and would suit him best. If he would also like to talk about his psychological problems, he should ask the team for a referral to see a clinical psychologist or psychological therapist.
Finally, your upset seems as if it is fuelled by your sadness and anger that your son has been having unpleasant, and at one stage life-threatening, treatment, and that despite this, he has not recovered. Unfortunately, for some people, this is what can happen. You are right that this process can be unbearable to watch. It sounds as if your friends and family have not been supportive either to you or to him. Instead, you have been offering care and support, on your own, for all of this time. For many people the first five to 10 years can be particularly difficult but the very long-term outcome for these severe conditions does suggest that eventually, things do improve.
Thus, it may be that your son will continue to need a high level of support. However, is does not have to be you that does it all. Please try to discuss with the mental health team, and perhaps with your son, exactly how sad and desperate you have been feeling, and ask for a meeting to look together at the options for both of you to receive sufficient support for the future.
My 22-year-old brother has been acting strangely for the last four months. We think this has been triggered by a failing five-year relationship, and his hate of the job he had, and debts of £5,000. He started off by having bouts of depression – crying for sometimes no reason, feeling down, not making much social contact and having no motivation for life in general. He was prescribed drugs and counselling by the doctor. This seemed to work for a while, however, he takes himself off the drugs, and cancels counselling.
In the last few weeks, his behavior has become increasingly erratic and aggressive. He got in trouble with the police a week ago; last weekend he revealed he took heroin and cocaine; and today he attacked our mum for almost no reason. It's a downward spiral, and I'm worried what is going to happen next. His behaviour is so uncharacteristic of him. He has been smoking marijuana for the last year or so fairly regularly, which I think has had an impact on his behaviour, as he is sometimes paranoid.
His general symptoms are: no motivation for his life, excessive sleeping (he doesn't get out of bed until 4/5pm most days), feeling down, lack of socialisation with his family, mild/medium paranoia, aggression, bad confidence, anxiety, lying (though this could be hallucinations of what he thought has happened). He hides from his problems – and tries to forget about them by sleeping and using drugs and alcohol.
He used to be quite confident, happy, carefree and just a lovely boy in general - and the boy we know now, is a different person. I feel he could benefit by spending some time in a psychiatric ward but he probably feels he doesn't need it.
What do you suggest we do?
Thank you for your detailed description of your brother’s problems, which do sound worrying for you, for your family and for him. However it is not possible to decide just from a description exactly what his problems are and what the best treatment would be. For that, a mental health professional needs to talk directly to the person, observe them, and discuss with them what the difficulties are and what help they might like to receive.
Your brother has undoubtedly had a considerable change in his behaviour, and does not seem to be managing well – sleeping in late, isolating himself and taking drugs and alcohol will all be likely to exacerbate any pre-existing problems.
Will he go and see his GP again, as he did before, or can you ask his GP to come and see him at home, documenting all of the above, and stressing that you are seriously concerned about him? As you point out, what was initially a relationship breakdown, problems with his job and some debt, is now looking much more intractable. You should try to ask his GP for an assessment, and it is likely that your brother also needs a referral to the local community adult mental health team. All help will need to be channeled initially through the GP, so please start there and be factual but persistent, putting things in writing if necessary.
Meanwhile, try to look after yourselves in this, and talk to your brother if you can, say that you are worried about him, and think he needs some external help in order to ‘begin to get his life back’. I am not sure from your letter about the exact nature of your brother’s attack on your mother. However, if should be noted that if there are incidents when your brother is being aggressive towards family members, to such an extent that you feel concerned about your safety, you may need to the call the police. Episodes of violence and aggression should not be ignored. Whilst calling the police can be difficult and will often be associated with thoughts about whether it was the right thing to do, it is always important to protect the safety and well-being of all family members including your brother.
I am in love with my boyfriend but find it very difficult. He has bipolar and treats me very badly a lot of the time. He disappears and doesn't ring me for days on end and goes after other women. At other times when he is down he is very needy and wants me there all the time, and doesn't like me to go out without him, needs me to be around him. My friends and family say I should end the relationship because it will never work and is bad for me, but I don't want to. Is there any way I can help him and anything I can do to make the relationship better? We are both 22 and met at university.
It can be very difficult when you are the partner of someone with mental health problems and at times, the role between being a partner and a carer can be unclear. I am sorry to hear that your boyfriend is not treating you well. You say that you love him and want to help him, despite the advice of your friends and family, who can perhaps see how damaging it can be at times to try and keep a relationship going in these circumstances.
The problems you describe about your boyfriend, that he is unpredictable, does not think about you and then wants to be near you all the time, might indeed be part of bipolar affective disorder, which can be characterised by rapid mood changes, including disinhibited sexual feelings, excitement and over-activity (often with little perceived need for sleep) and then very depressed and upset feelings, including feeling worthless and hopeless. Not only your boyfriend but you yourself will find that the swings between these extremes are exhausting, confusing and at times frightening.
You are asking how to help him. One suggestion is to try to get him some help that does not depend on yourself. However caring and loving you are, these kinds of problems are not easily dealt with on your own. If your boyfriend does have bipolar affective disorder (and I cannot tell from your letter if this has been formally diagnosed), he also needs professional help and longer term support.
The place to start with this is to talk to him about how you feel in this relationship, instead of just reacting to his needs all the time. When you do this, you should try to be conversational, not blaming, but say that the situation is difficult for you, and that you are worried about him, and would like to find a way that you could both find some extra help. Initially, you could try to get him to see his own GP and to ask for help himself. The kind of support he might receive would typically include medication, lifestyle changes (eg healthy eating and sleep patterns) and also very detailed micro management of his mood, to be able to spot the triggers of the mood swings, take early action, and to develop ways of smoothing out the extremes. This will take skill and motivation, and it will help if your boyfriend can recognise that he needs this kind of longer term help. You may have to be persistent and persuasive about this – that while you love him, you can also see that his problems need more support than you can give consistently, and that he will need to find ways of accessing this for himself.
Deciding to support a partner with their mental health problem is often a major life decision. In view of your partner’s age, I am wondering about his family of origin and whether they are involved in supporting him. If he does not want to access help, can you contact his family and tell them that you are worried about him, and see if they can help him more directly? The type of difficulties that your partner has will benefit from having a good network of family and friends involved. This will ensure that you are not solely shouldering the impact of supporting your partner. In addition, should your circumstances change and you no longer feel you are in a position to remain in a romantic partnership with your partner, your partner will still have other people around who can provide him with support.
This is not to say that you should give up on the relationship, that is your own decision of course, but if you are going to stay with him, you need to think about your reasons for doing this. Are you hoping to ‘save him’? Are you thinking this will all blow over soon and he will change? Do you feel guilty at finding it all so difficult? Are you frightened of a new relationship now you are no longer at university and have to face new challenges yourself?
MDF The Bipolar Organisation is a charity that offers information and advice. As you may know, there have been some well-known figures in the media such as Stephen Fry, Kerry Katona and more recently, Catherine Zeta Jones, who have been open about their problems with bipolar affective disorder and also how to deal with them.
While your boyfriend is so unstable and unpredictable, your relationship is very one-sided and he is not able to support you. Ideally, relationships offer both people what they need. Your love and care for him may be best expressed by ensuring that he begins to get help for himself so that he can manage a meaningful relationship. Meanwhile you also need to be cared for. A longer term goal you might want to consider is to find a way to continue to be a supportive friend while developing other important relationships for yourself.
My 74-year-old mum has recently had a psychotic episode, stress-induced, following a fall before Christmas, two operations under full anaesthetic and months of inadequate sleep. She was prescribed olanzapine and has spent a month as a voluntary patient in a mental health assessment ward. Yesterday, we attended her discharge meeting, which was pretty much, 'Keep taking the tablets, see you in six weeks'. In a way this is a good thing, as it shows how effective her treatment has been, but I had hoped that some on-going treatment might have been spoken about, eg CBT or relaxation classes.
I appreciate that NHS resources are stretched, and that they must be channelled towards those in greatest need, but I still wonder whether some sort of talking therapy would be helpful in terms of avoiding a relapse. Mum has always suffered from low self-esteem, and tends to suffer stress out of proportion to the circumstances. In particular, she often has poor sleep - long periods of wakefulness during the night. If there is something out there that would be helpful, and that mum would be happy to participate in, then we as a family would consider it a worthwhile investment to pay privately if necessary. Can you recommend anything?
The onset of psychosis typically occurs in young adulthood. There are however, a number of individuals who develop psychosis in their later years – in their 60s and older. You are asking if there are any other recommended treatments for someone like your 74-year-old mother apart from being prescribed medication. I think at the moment, the National Institute for Health and Clinical Excellence guideline recommendations are based on adults up to the age of 65, and the research has not yet been done for those with these problems starting in their later years. Thus while it might well be helpful for your mother to be offered some cognitive behavioural therapy for her psychotic episode, it sounds as if this is now better, and what she really needs is some help with her sleep. The medication she has been given, olanzapine, would be likely to help with sleep anyway, and this is probably why she has not initially been offered any other interventions. The hospital team might well assume that your mother will continue to feel a bit better and they will check this at her 6 week follow up. At this time, it might be helpful if she is still having trouble sleeping, to ask if she can be referred for some specific help with this.
It is unclear from your letter whether your mother has problems getting off to sleep or waking up during the night from her sleep and staying awake. Difficulties with sleep are not uncommon particularly as we get older. Insomnia has been linked with different causal factors, including stress and worry. Understandably, insomnia can have a negative impact on our day-to-day functioning including our mood, which in turn can negatively affect our sleep patterns. Therefore, if your mother continues to experience difficulties with her sleep, there will be some value in asking either the hospital or her GP to look into local services that could help your mother with her sleeping difficulties. As a first step, your mother is likely to be offered information and advice on sleep hygiene – very practical steps an individual can take to facilitate good sleep. It is possible that she may also be offered some additional medication to specifically tackle her sleep. Depending on the type of difficulties and the success of the sleep hygiene programme, your mother may also be offered a course of cognitive behavioural therapy, which is provided by a professional with specialist skills and may include interventions such as relaxation. You can find out more about treatment for sleep problems at the NHS Choices website. There is no private treatment that your mother is missing.
My 27-year-old son was at university studying psychology when he had his first psychotic breakdown and was sectioned. He dropped out and has since lived with us, his parents. He still needs a lot of support but is much better and has recently began to think about the future. He had planned when he went to university to become a clinical psychologist. Would this be a reasonable ambition for him now, after nearly 7 years in the mental health system? Are they any drawbacks to him considering this route? We are willing to support him if he is able to return to study and training, but not if it will make him unwell again, or if he is pursuing an unrealistic aim.
Psychosis commonly starts during young adulthood when individuals are leaving home or starting college. Following onset, it is not uncommon for people to drop out from their university studies and return to their family home to recover. We are glad to hear your son is recovering well from his previous problems and that he has recently begun to think about his future and what he would like to do.
You are asking if it is realistic for him to consider studying and training to become a clinical psychologist. We know that a history of mental health problems should not preclude someone from pursuing their goal in training in their chosen profession and joining the workplace. As you might imagine, there are always people in the helping professions (as in other professions) who have had, and may continue to have, their own problems including those related to mental health. Sometimes their own experiences have been part of their reasons for wanting to do these kinds of jobs. The issue is whether you son will be able to cope with the rather stressful business of all the studying he will have to undergo, a good psychology degree (or its equivalent) and the intense competition he will face subsequently to find himself some relevant (preferably paid) work experience, (psychology assistant or research worker experience in mental health) to enable him to be eligible to apply for an NHS three-year doctoral training course. The success rate for places on these training courses is not high, and applicants typically have to have excellent academic qualifications and be very motivated and persistent (the British Psychological Society website has relevant information).
However, there is no intrinsic reason why your son should not consider this career. Dr Rufus May has discussed the fact that he had several episodes of psychosis before he started and successfully completed his training in clinical psychology.
I am sure there are others who have not talked about it so openly. Your son needs to be realistic and aware of the problems he will face, be self reflective about his previous difficulties and how to continue to manage them, and be prepared to seek help himself as a professional in order to practice safely. We all have to do this.
Finally, I am not sure how much you have discussed with your son about his previous and future job plans. It is possible that your son may wish to pursue his original goals of training as a clinical psychologist. However, it is also possible that your son’s thinking about his career, his interests, goals and values may have changed over the course of the last seven years. Either way, your son is likely to benefit from some ongoing careers advice that allows him to think about his goals (short, medium and long term) and what he needs, including levels of support, to meet them. A careers advisor should be able to help your son to consider some of the relevant issues and options available to him. It is worth noting that thinking about your career and training can be anxiety provoking for anyone, particularly if you have been outside of the workplace or studying for a long time following difficulties with your mental health. Encouraging your son to take small steps to regain his confidence and skills is often a good approach to adopt. We wish him luck.
What if the mental health team (hospital/community/crisis) doesn’t involve the parent/carer? What if they do not offer all the good advice and support that you explain here? What if they just prescribe a cocktail of 3-4 different antipsychotics? And then what happens when the patient hangs herself? All of that describes what has happened to my daughter, whom I buried 3 weeks ago.
We were so sorry and shocked to read your letter. For a parent, the death of a child can lead to a myriad of emotions including shock, fear, numbness, emptiness, anger and complete despair. In your situation, it seems likely to have been traumatic. This is particularly the case when your child has mental health difficulties and has taken their own life. The death of a child is something that can hardly be recovered from. The circumstances you describe so movingly do sound extremely sad and difficult to understand.
As far as we can gather, it is advised that all NHS trusts should immediately start an enquiry after an unexpected death like this – a ‘serious untoward incident enquiry’. They would typically start by writing to you to express their condolences, and then try to find out from you and relevant staff exactly what happened and why. At this stage you can tell them what you think and feel. The aim is to try to learn from the episode so that it does not happen to someone else. Usually there is a detailed written report and you, as the carer, would be told about the conclusions and any actions that result. This may be scant comfort, but it can, at times, be a helpful process, for you as well as for the services involved.
Do try to contact your daughter’s consultant/hospital managers and say that you want this to happen and that you want to be involved. You may also find it helpful to contact the Patient Advice Liaison Service (PALS). There is a PALS in every NHS trust and the service is designed to help you if you have concerns about any aspect of healthcare or would like to make a complaint about the care you receive. You can locate the PALS service that covers the Trust and health services that your daughter used at PALS online.
The other suggestion is that you yourself find support for your grief. The full impact of this truly awful event on you and those closest to you will not be entirely clear and perhaps during the initial months, your time and efforts are likely to be full with a coroner’s investigation and practical arrangements for your daughter’s personal effects. How we make sense of the suicide of a child, the events preceding it, and the aftermath is not written in a manual – it varies from one individual to another. However, there are organisations that are specifically designed and equipped to offer specialist advice, support and care for people who have experienced bereavement. Of course, they cannot bring your daughter back and change the tragic circumstances surrounding her death, but they can offer you a range of supportive services. We are sorry that we do not have any details from you to offer a more personal reply, but organisations such as Cruse Bereavement Care do work with bereavement, and do understand the devastation of such losses. You can visit the Cruse website or call their daytime helpline, 0844 477 9400.
You may also find the University of Oxford Support for people bereaved by suicide web page to be helpful.
We can only hope that you eventually find ways to look after yourself in all of this. Please accept our own thoughts for you at this time.






