How can families be involved?
• Good theory – What should happen
• Bad practice – What actually happens
• What can families do?
Current government guidance says the mental health trust and the
Strategic Health Authority (SHA) should involve families in the
investigation process and kept them fully informed if they so wish.
The guidance was issued in February 2008 by the National Patient
Safety Agency (NPSA).
• within the first three days of the incident, mental health trusts and SHAs should be planning how they are going to contact the victim’s family and who will be their contact person (on page 7 of the NPSA guidance)
• families should be kept informed and involved during the Internal Investigation - so that any concerns they have can be looked into (page 9, 10)
• families should have the opportunity to meet senior members
of the Trust to discuss how they will be involved in the process (page 10)
• the findings of the Internal Investigation and the actions to be
taken should be discussed with families (page 10)
• the Internal Investigation report should usually be shared with them (page 11)
• families should be informed about any external Independent Inquiry and told how they can be involved (page 13)
• they should be offered a meeting with the Inquiry panel (page 15)
• they should have adequate time to see the final copy of the inquiry report before it’s published (page 15)
The official guidance says any communication by health bodies with the families of victims should be held in the spirit of honesty and openness. The investigation processes should be transparent, open, inclusive, timely and proportionate.
The rest of this section is worth quoting in full:
The basic principles [for Health authorities] underlying this communication are the:
• principle of acknowledgement;
• principle of truthfulness, timeliness and clarity of communication;
• principle of apology.
When an incident leading to serious harm or death occurs, the needs of those affected should be of primary concern to the trust, the SHA and those undertaking any investigation.
Any contact should be undertaken in a respectful, dignified and compassionate manner, and in a spirit of openness.
A designated, senior individual, with the appropriate skills and experience, at the trust (in the most serious incident, for example homicides, likely to be at board level) should take the lead, and agree with the family who the main family contact will be.
Victims and families want to know:
• What happened?
• Why it happened?
• How it happened?
• What can be done to stop it from happening again to anyone else? “
(from page 19 of the NPSA guidance)
This all appears to be right and proper, and very good practice.
But whilst the theory sounds great on paper, the reality is often completely different.
In nearly three years of research, looking at hundreds of cases and talking to victims families, there has never been a single case where this system of open, honest and timely communication has worked as it should have done, as laid out in the official guidance.
All the families contacted for this research without exception, had found it extremely difficult to get any information from the mental health trust or SHA involved.
Often it would take repeated requests from the family to get any response. And if a response did come it would often be partial and unhelpful.
If victims’ families are denied access to information about the case, they are left just with rumour, speculation and their own imagination about what happened – which is deeply unsettling and can only add to their distress.
Only when a thorough Independent Inquiry was published did some families (not all) start to get some of the information and answers they were looking for.
And those were often the inquiries that took their job seriously and which were truly independent.
So what can families do if they have concerns, or want to be involved in the investigation process?
• Write to the Chief Executive of the Mental Health Trust.
• Write to the Chief Executive of the Strategic Health Authority.
(For contacts see Who Does What page or Further Help page)
Families could ask
• if the case is being investigated
• if the perpetrator was a recent patient of the mental health trust
• how the trust is planning to keep the victim’s family involved
• who the contact person will be.
You might want to quote from the NPSA Good practice guidance above and ask them how they are meeting their responsibilities.
You should keep copies of any letters, and ideally make a note of any phone conversations you have with the Health Authorities.
Letters from the victims’ families should bring an urgent response from the health authorities.
If not, you might want to think about contacting the local press to tell them of your difficulties. They are bound to be interested.
NHS National Patient Safety Agency. Independent investigation of serious patient safety incidents in mental health services. Good practice guidance. (February 2008)
NHS National Patient Safety Agency. Being Open, Communicating Patient safety incidents with patients, their families and carers (2009)