The largest group comprised parents who considered that they had not received the necessary professional help or advice. They set out a range of supports that they felt might have been usefully available. In addition to this group, a small number of parents reported that they had received help which generally had been appropriate in the circumstances.

Most parents felt that they had not received the help or advice they needed. The largest group of responses (20) identified service deficits within the health service. These included specific problems such as lengthy waiting lists for appointments. One parent stated:

(my son) went to the GP and was offered an appointment with a counsellor, which would have taken a few weeks to arrange.... I wish that (he) had the opportunity to speak to a counsellor sooner...

and another that his/her son:

...did agree to join a group for counselling or therapy but there was not an available place at the time and he was put on a waiting list. The University had at that time only two student counsellors and they were over-stretched.

The issue of waiting lists was brought up in another form by those parents who felt that young people's problems should be responded to more urgently. They considered that help should be 'fast track' and some suggested that young people should have a dedicated or specialist service. Whilst waiting times were generally mentioned in the context of the NHS as noted above, other parents were aware of delays in accessing help at university or within community mental health services. It should be noted that these responses focused on the help for the young person, not on help for parents.

Some parents also considered that there was a need for further referral or second opinions. These responses were also related to the young person's assessment, care or treatment. In their view, their child's problem merited attention from a specialist for assessment or treatment. One parent felt that he or she bore some responsibility for not pressing for a further opinion:

With hindsight, we should have sought second opinions or treatment without being afraid of upsetting a psychiatrist.

While some parents considered that services should have been called upon earlier, other parents voiced the opinion that it was not simple delay or inefficiency that was the problem, but that existing services did not offer the right kind of help for young people in general or their child in particular. One parent argued that the 'psychiatric' service should be replaced by community based provision for young people. Another had considered paying for a place in an adolescent in the private sector but the cost had been 'prohibitive'. This parent argued:

(we) need a young people's mental health service with supportive residential accommodation and therapeutic input.

Some parents described a failure of health services to provide both information and care. This parent reflected that:

....we his parents were not informed or advised what services could be available

- this was in the period following a serious suicide attempt and when the young man was living at home with his parents. Another parent who went to see her GP about her son's depression said she was told:

.... even if (my son) went to see him (the GP) there would probably be nothing he could do for him. We were given the firm impression that no help was available. He (the GP) gave us no advice and made no suggestion that we might see someone else who might help.... We have found the professional responses we have received to our concerns to be unbelievably unhelpful. We wish there had been professionals with real knowledge and understanding that we could have turned to.

In addition to those responses which focused on the services available or otherwise during the period of the young person's depression or disturbance, a small number of parents made mention of the support available or otherwise to them in the period following the death of their child. Other research (Pritchard, 1995; Stanley and Manthorpe, 2002) has described support for those left behind after a suicide as a neglected area.

In the experience of one parent, help had proved inadequate:

... nothing at all was offered. There should be some support for parents - information about PAPYRUS, for example, which I found out about by accident.

Another parent was highly critical of the police:

The attitude of the police was utterly deplorable and some of them made a traumatic situation far worse.

One parent also referred to the need for 'more compassionate treatment and understanding by the police, coroner's office / coroner.' This person considered that more information about procedures would have been helpful and suggested that people bereaved by suicide might benefit from a special counsellor.

Twelve of the respondents who considered that they had not received adequate or appropriate help identified a lack of communication between parents and health services. Parents saw themselves as possessing important details about their children. One parent suggested that professionals need to be in touch with people who knew the 'background story'. Other parents considered that their perceptions would have been potentially helpful to services:

We, as a family, should have been included as we were living through this with him and could see how ill he was.

The difficulty for parents in respecting their adult child's wish for privacy and patient confidentiality was expressed by some parents. One noted:

Because (my son) was an adult, we were only peripherally involved.

Another had been told by services that their daughter had a right to determine how much help her parents should provide:

The doctor insisted that it should be (her) choice.

This respect for the adult child's rights was balanced by parents' concerns that perhaps they could have done more:

I know that the child's visit to the doctors is confidential but it would have helped enormously if I was informed of his illness, depression, and attempted suicide.

Finally, among the group who replied negatively to this question were four parents who included help, information or education about warning signs among matters which could have been of use to them. Warning signs have been discussed above but such comments confirm that some parents see information as an important form of help and that this area might be researched or developed. Such information was described as potentially available through helplines, media publicity, leaflets or school publicity.

The second type of response to this question came from a small group of five parents who considered that they had received appropriate help or support. One parent had received information from a psychiatrist, another reported that his/her son had received regular counselling and another set out a web of support which had proved helpful although acknowledging that more could have been useful:

... our Doctor made sure we knew he was there for us anytime. (The priests) at my church were very supportive. For this reason we didn't seek 'help or advice' elsewhere. The countless parents of 'suicides' who wrote or phoned saved our sanity and our lives. Looking back now, especially when we have 'bad' days, maybe we should have sought more professional help. Especially for our relationship with each other both physical and mental.

These findings convey parents' perceptions about help and advice from professionals. Some parents linked their own needs to the needs of the young person. A number revealed their understanding of the difficulty of balancing the rights of the young person to make their own decisions about accepting help with parents' concerns and anxieties. Some noted problematic service delays and deficiencies, together with individual staff who were unhelpful. A small group of parents mentioned their own needs explicitly, particularly post-suicide. This may be one area where the experience of PAPYRUS members is uniquely valuable.

© University of Hull and PAPYRUS
October 2001

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