6/10/14 Letter to Kath Evans, Head of Patient Experience, NHS England

6th October 2014

Re: Improving the Patient Experience; Children, Parents, and those avoidably Bereaved

Dear Kath,

I look forward to our telephone conversation and only regret we were unable due to both of our hectic schedules to find an opportunity to meet in person this time. I am aware of your meeting on Wednesday and hope this letter, along with our conversation, provide material you can take to that meeting for discussion.

As you know I speak from both personal experience, and my knowledge of the experiences of many others whose children have died or been severely harmed due to errors with their care. I would refer your colleagues to our website for more information on this.

I believe that the patient experience team could learn an awful lot from really listening to the patient stories the Mothers Instinct Group has compiled. Our ideas for improving communications aimed at parents can be found at http://www.mothersinstinct.co.uk/advice-parents but it is just as suitable for clinicians.

One would hope, first and foremost, that improvements in communication between parents and clinicians would make for a more acceptable patient experience for many children and their families, and, even more importantly, reduce the numbers of unnecessary deaths due to failures to recognize the deteriorating child.

I am sure you are aware of many examples of tragic outcomes where analysis of the patients journey reveals parents tried, very hard, to gain appropriate care for their child only to be inappropriately reassured, paid lip service to, or in the worst cases simply ignored.

In addition, you will be aware of the devastating impact of the current appalling treatment of bereaved families when things go wrong with their child’s care. It is truly horrifying, that despite the public being told all trusts are open and honest about their mistakes, and now the Duty of Candour, we still have a situation where the experience of the majority is one of absolute terror.

A newly bereaved parent, whilst not the child’s treating clinician’s patient, is still a patient of the NHS, and should be treated with care, empathy and compassion by NHS teams, regardless of wether that team has caused the bereavement.

To have unintentionally caused harm to the child, through error, could be considered ‘human’ we all make mistakes at some time in our careers. Naturally, the parents need a full and thorough explanation as to the circumstances that led to those errors, (which is rarely forthcoming) and not all families are likely to be able to forgive when a child has died, nor should they be expected to. None the less, it can be accepted that the clinician did not intentionally cause the harm, and, if only the responsible people actually made sincere face to face honest apologies to the families themselves (which we at Mothers Instinct believe should be the very least anyone might do in order to feel ‘accountable’) that family would at least know the sorrow and regret the clinician feels and that they have learned to do better.

However, the NHS has lost sight of the serious harm/death they have also caused the parent. Let me tell you, to watch your child die, causes both a part of you to die, and the most severe of injuries any one human being can sustain to be inflicted on what’s left. Ask ANY PARENT what is the worst possible thing they could endure in their lifetime, and the vast majority will likely proffer to witness the death of one of their children. The physical pain and emotional injury is indescribable and all consuming.
I am sure it would be inconceivable that any clinician, having recognized they have caused injury to a child through error would consider it better to be dishonest about the error, even if it would lead to further pain and injury to that child, than admit their faults and minimize any further pain caused

So I ask, just how are clinicians justifying their decisions to bend the truth, cover up, omit information, or any other terminology we want to give to the very real dishonesty demonstrated time and time again when a parent (an nhs patient) has witnessed their child die; the worst possible injury that can be inflicted on a parent; knowing the dishonesty will cause that person even more avoidable pain?

That behaviour needs to be viewed as

‘THE CONSCIOUS AND ENTIRELY DELIBERATE DECISION TO CAUSE FURTHER HARM TO A PATIENT (THE PARENT) WHO HAS ALREADY BEEN CAUSED THE MOST SEVERE OF AVOIDABLE INJURY (THE LOSS OF THEIR CHILD) THROUGH ACCIDENTAL ERROR”

I am all too aware of the serious affects on health of many many bereaved parents of this despicable and deliberate behaviour.

As head of patient experience, I feel it is your job to champion the view that any member of the public is also a patient of the NHS, so deliberately withholding information from a member of the public (particularly an avoidably bereaved parent) must be considered a deliberate act with the foreseeable risk of harm. There is plenty of evidence to prove that being denied the truth does cause injury and illness to these people.

Dishonesty in these situations is a conscious decision to cause harm to a patient of the NHS, and this is totally unjustifiable.

Once it is accepted that the NHS employees do not want to cause further injuries to the parent bereft of their child, one would hope that it would be their aim to provide some care to help them deal with this injury (their loss)

If this is the case then I would like to discuss ideas for a Bereavement Care package specifically for this type of situation, improving the offerings of bereavement counseling, Cognitive Behavioural Therapy, Bereavement Groups for those affected by clinical negligence etc.

There needs to be a care package put in place which can be offered in these situations, and it needs to be delivered by people independent of the treating institution, with total assurances to the family that information shared will remain strictly confidential (and harsh penalties such as job losses and compensation for the family if it is proven confidentiality is broken) if the service is to be meaningful and effective.

The telephone number for AvMA and their leaflets need to be handed out or posted to the family at the first available opportunity. I would be happy for Mothers Instinct details to be given out so people can visit our website and email me for support.

In addition to the parents, those siblings left behind must also be considered in any care package being offered. I am sure the charity “Harry’s Rainbow’ set up by bereaved parents Odette and Lee Mould after having to support their lost sons twin sister through the ordeal of his death, would offer input on this.

“The NHS doesn’t want to tarnish its reputation” is the excuse often given for dishonesty. Wouldn’t the reputation be better if mistakes were acknowledged, publicized, and learned from, and the trusts could demonstrate the gentle care and compassion they had provided for the family in a care package, along with sincere, face-to-face explanation and apologies from those responsible?

You hear of many bereaved parents asking for ‘accountability’ and it appears they mean job losses. I believe many of those parents reach the point they feel like that because of the combined stress and effects of both the tragedy, the complete lack of specific bereavement support for negligence victims, and then the lies and avoidance of face to face discussions with those involved.

I have always wanted to have a meeting, with the clinicians responsible for Jasmine’s care, including the nurses, where each person explains to me why they made the mistakes they did, what the circumstances were, and most importantly how much they regret what happened and what they will do differently from now on. Instead I am told by managers “we must protect our staff, they need to be able to continue to do their jobs etc.’ what about me? What about what I need in order to finally fully grieve for my daughter, and have closure on this? It appears nobody gives two hoots about this. Until I have met face to face, I don’t know what those on the front line are aware of about how their tiny little (almost unnoticeable mistake) added to the snowball effect that led to tragedy. I have to take the managers word for it. The managers who I believe are being less than 100% honest based on the information that has been provided to me by independent experts. You can appreciate my distress.

I believe early, honest full explanations and apologies, face to face is the way to treat families. I also believe that the family, not the trust, should decide when the issue is closed. If for example at inquest, or through legal proceedings, or as time goes on, much more information is discovered, the family should be allowed to request another such meeting should they require it. If a legal case identified far more errors or information than the trust internal investigations did, then those responsible for those investigations should also meet with the family and explain the reasons for their shortcomings and apologise for them.

This is the accountability families deserve.

There should not be pressure put on families to behave with maturity, composure and decorum either. Remember it is their child that died, not the clinicians. If a parent raises their voice, swears, or is insulting, remember what they are suffering, and who caused this pain, albeit not deliberately. It should be the responsibility of the NHS to provide care, counseling, and compassion to the clinician if they need it afterwards. I believe many clinicians ought to be brave and courageous enough to be able to (with appropriate support) take a ‘verbal punch’ from a family whose child has died and errors have been identified. I don’t believe all families would deliver a blow, but those that do should not be criticized for it.

I find it outrageous that trusts can decide not to engage with bereaved families if they shout, swear, scream etc., or let rip on the phone. If anyone working in those institutions had ever experienced the stress, anxiety, sleeplessness and despair caused by the unnecessary loss of their child, they would I am sure have absolute empathy.

However unpleasant engaging in this process might be for NHS employees, it comes nowhere near the distress and upset caused to parents who are shut out or told staff must be protected and they must go away and be happy with a vague letter from some manager or another, written with assistance from the legal department.

We hear about ‘the trusts’ errors, ‘the trusts apologies’ etc. What people need are human, sincere, face-to-face apologies. The ‘trust’ didn’t make the errors, the people working there did. It might have been ‘systems’ that failed, but someone, or a team of people, is responsible for those systems. Trusts don’t learn from events, people do. A ‘trust’ cannot apologise. Compassionate and sincere people can.

If any one of us accidentally caused or contributed to a tragedy befalling a family, we would all ask ourselves what the very least we could do in that situation would be. I feel the least would be to stand face to face with the victims of our mistakes, explain how it happened and how sorry we were. And, if necessary, take the ‘verbal punch’ that comes back at us from those who are suffering as a consequence.

Why do doctors nurses or managers need to be protected from doing what anyone ought morally to expect of himself or herself? The ‘there’s nothing we can to bring back your child’ approach is insulting and disgusting. It is not an excuse for inaction. Or cover up. It is never better for the family not to know the truth (I know this is how some justify lack of candour to themselves, ref John Moore Robinsons case) Despite not being medically trained, many families, probably most, know when things don’t add up, and anger resentment stress and ill health builds when they know they are not being told the truth.

To summarise,

If you really, genuinely, seek to improve the patient experience for children and parents, you need to address

• Communication between parents and clinicians
• Getting the basics right (no excuses) see my blog posts regarding this

If things go wrong, and despite longing for a day when they won’t, we know occasionally they will, you should consider the ‘patient experience’ of the avoidably Bereaved

• Commitments not to deliberately cause further injury to a grieving family. This requires Honesty, and courageous Face-to-Face Accountability meetings. To be ‘accountable’ in a meaningful way, face-to-face explanations and sincere apologies conveying regret from the front line staff involved and their management teams are the only way forward.
• Provide support if needed to help clinicians, managers to be honest and attend ‘accountability face to face’ meetings with families
• Provide specific Care plans for those bereaved through error, including counseling packages, support groups, and details of charities such as AvMA. Mothers Instinct, Harry’s Rainbow.
• Allow families to decide when all their questions have been suitably answered
• Allow further accountability meetings if legal or other inquiries uncover more information than was shared from the start

I look forward to our conversation and hearing your thought on these points.

Kind regards,

Joanne Hughes
Mothers Instinct