Best Practice Examples

Kirstin McIntosh, Odette Mould, and Hannah Aucock are three bereaved parents from the Milton Keynes area who came together to influence change at the hospital where their children had been treated.

The following case study has been kindly written by the trust to be shared on our site, to encourage other NHS teams involved in paediatric care to realise the significance of families opinions, and embark on similar projects, working together with bereaved parents, for the benefit of all.

Difficult beginnings

Working with families has significantly improved the culture of Milton Keynes Hospital – but things did not start so well. The relationship started in sad circumstances, when three children – Calvin, Harry and Mia - died at the hospital between March 2009 and October 2011.

In each case, an inquest was held which resulted in three narrative verdicts and two Rule 43 reviews of paediatric care requested by the coroner. Also, at the request of the coroner, the Care Quality Commission (CQC) intervened after the Calvin’s death. The hospital realised that standards needed to be raised and so implemented an extensive action plan, including setting up a new children’s A&E, putting in additional high dependency beds, employing more staff on the children’s ward, improving training and making improvements to the operating theatres.

While the changes made were extensive, and the hospital continued to make significant investment into its children’s services, including a review by an independent expert, appointing two Board level Children’s Champions, the hospital fell down when it came to communication with the families. The three bereaved families heard very little from the hospital, and the only communication they did have was slow, inconsistent and very formal. While the hospital’s managers believed they had taken the necessary action, the families were left feeling like the hospital didn’t care and wasn’t listening as none of these changes had been shared with them, nor had their views been sought in deciding what needed to be done.

Kirstin McIntosh, Mia’s mother, said: “There was a brick wall of bureaucracy. You can have all the investment, new processes and procedures in the world, but we were concerned that it was not enough, nor focussed on our issues. We were concerned about the culture, about how the teams were communicating with each other, and how the hospital communicated with us – if there had been any real learning from the deaths of our children. For Mia, we had asked to be involved in the internal investigation into her death, and this was ignored, as were our concerns. So we simply didn’t trust what we heard in the media – it was always the same things. We were worried it could happen again.”

The families – unknown to hospital management – were getting more and more frustrated, and came together for mutual support and to campaign for change. All the families felt they had valuable information to share, and were concerned that other families should not have a similar experience. They wanted to meet with the hospital, and felt the only way they could get the hospital to notice was to go to the media, and their heartfelt appeal appeared on the front page of a local newspaper and local television news.

Maria Wogan, the hospital’s Children’s Champion, said: “When the families appeared in the media, we were shocked. We’d met the CQC’s requirements and we had also commissioned an independent review of children’s services - the Board felt the problems were identified and being dealt with. Staff had been meeting with the families. We were doing the things we needed to do. So our initial thought was that we should ask for a correction. But then we realised that if the families felt they weren’t being listened to, it was their opinion that mattered. It was a big realisation for us that we hadn’t been getting things right and I took responsibility for contacting the families.”

Getting heard, creating trust, and being involved

Maria called the families and asked for a meeting – one as a group, and one for each family to have the opportunity to air their individual concerns. The group meeting was attended by the Chief Executive, Medical Director, Nursing Director, Maria and the Non-Executive Director Children’s Champion. The families were pleased – but they had been to meetings before and hadn’t felt they were getting their views across as nothing had happened as a result. However, it was an important milestone. Yet there were two important indicators that showed it might be different - the meeting was organised very quickly, and the senior management were involved.

Kirstin said: “We were somewhat sceptical about the meeting and what it might achieve, if the hospital behaved as it had done previously. But there is no point having a meeting and not having an open mind about it. We didn’t want things to happen again, and that’s why we engaged, as we were all adamant that our experiences should be seen as a valuable resource for learning and we wanted to make sure change happened.

“At last, we felt we were being listened to in the meeting. Maria didn’t give excuses, but did say this is what she couId do. She was honest with us. She was willing to trust us, which made us more willing to trust them. Maria went through all the new investments and we explained we were more interested in the people side of things, and why they were even more important to us because of our children’s experiences. We wanted proof that the changes being made were the right ones. We also wanted to offer our own suggestions, based on our experiences. And this time, we were allowed to be involved. It was a huge step change.”

Maria admits that she and the team were nervous about meeting the families together. As Kirstin says they were “three angry sets of parents” and could be seen as “pretty terrifying”.

Maria said: “Some of us were anxious about facing the families as a group. We didn’t know what we could do to make things better. We couldn’t make their pain go away. But doing nothing was worse – the only way we could help was by listening, then changing and improving.

“When we sat down with the families we realised there were a lot of similarities in what they were saying and that’s when we understood what we were missing. We realised that working with the families was a great opportunity to improve the services we provide to all children and families”

Martin Wetherill, the Medical Director said, “After the personal discussions with the families, I saw how much we as a clinical team were missing in terms of feedback. It was distressing, but very illuminating to listen to the comments made.

From Kirstin’s point of view, “It felt very different. I felt like the hospital was finally starting to do something for Mia. Afterwards it was like I was able to breathe again. It was the start of the healing process.”

Greater humanity, openness and collaboration

From that point, the relationship improved rapidly.

Kirstin said: “Previously we didn’t get accurate or timely meeting notes, but there were extensive notes from meetings then on. Importantly, the hospital followed up on every single thing we asked about. Maria was a single point of contact, and was telephoning and emailing rather than sending formal letters. She took ownership. It really helped having someone senior enough to have the authority to act, and that she was prepared to go and investigate and do more. We had regular meetings and our concerns have been developed into issues that will be addressed through the business plans for children’s services and the Trust. .”

Maria explained: “We needed to be more feeling and more human. We didn’t realise the pain we were causing before. We also needed to rely less on assumption, both in terms of what bereaved families might want and also making sure that things had been done.

“For example, when we carried out the Root Cause Analysis (RCA) into Mia’s death, we did not involve Mia’s family from the beginning and then, when we did involve them, we failed to include their comments and recommendations, which made the family feel ignored, excluded and upset. Once we understood the impact this had on the family, we were able to learn from that.” Further, it was through their concerns and other feedback that the hospital recognised that the RCA process itself was not sufficiently robust, and staff needed better training. Kirstin and her husband are now working with the hospital on its review of the RCA process.

“When we produced the Rule 43 response to the coroner’s ruling on Mia’s death, we produced a more extensive and comprehensive response than we had done previously because of the involvement of Mia’s family. It was the first time we’d done that, and made us realise families should be given an opportunity to be involved.

Now the hospital tries to tell the families anything about the hospital that could affect them and the families see they have a continued role as a ‘critical friend’ to the team, as well as support other bereaved families wherever possible.

A parent is an expert on their child

Working with the families and the paediatric expert, Dame Elizabeth Fradd, is bringing about another important step change – ensuring that the recognition that “A parent is the expert on their child” is at the heart of the Trust’s children’s services. Changes that are being made include the addition of a section for parent’s comments on key documents about a child’s care including Paediatric Early Warning (PEWs) Charts and the new intentional rounding records. The team is also planning to pilot bedside handovers in response to feedback from the families and Dame Elizabeth.

Dame Elizabeth said: “The Mid Staffordshire Public Inquiry report identifies many aspects of culture that impact on patient care. None are more important than the failure to see things from the patient’s perspective and to understand the effects of actions – or inactions – on them. Recognising families as experts in the care of their own child is fundamental to the delivery of appropriate, individualised quality care in children's services - care which importantly reflects the views and experience of the family of their child. Embracing this concept helps ensure the right thing is done for the sick child, at the right time in the right way, every time.”

Kirstin agrees: “It is important to put parents on an equal level with the medical person. We know our children. We know their habits and little ways, and this is important when children are being treated. We can be valuable members of the treatment team.”

Creating lasting transparency

As Kirstin points out, change starts because of individuals, but you also have to build it into the systems so it doesn’t depend on those individuals to continue.

Maria says: “It’s not just a one-off. We are building it into the way we work. The learning is embedded into our development plans for 2013 to 2016. We’ve also been making sure we are now listening to our patients regularly. In 2012 we started a programme called We Care, which included a number of “In Your Shoes” workshop sessions where staff sat down and listened to patients. Action plans were put together based on their experiences. Dedicated sessions for the experiences of younger patients and their families – called “In Your Little Shoes” – were held in early 2013, where paediatric staff listened to the experiences of more than 30 families. We also ran a postcard competition for our young patients and have received valuable feedback and ideas from over 200 young people. This feedback is guiding our future improvements.

“We are changing the culture. The circumstances that sparked the change were tragic, but so much positive has come out of it. It is good to hear the good and the bad – we’ve learnt to listen.”

Martin Wetherill also sees the benefit of direct interaction. “Speaking with patients and patient’s relatives is so important. The users of any service are the people who see the faults, far more than the people providing the service. That’s true of any industry, and hospitals are no exception. We want to encourage people to come forward.

“We’ve taken what we’ve learnt from this experience and are reflecting it into all our services. For example, the We Care sessions were a really helpful way for us to listen. It was an eye-opening experience to attend the sessions and hear firsthand what people thought about our services. We have rolled it out to all our specialties now.

“We are also being much more transparent. Much more information is going to patients, and in the case of children – their parents.”

For Kirstin, it has been a difficult journey, but she would recommend that any families in a similar situation keep pushing if they feel things need to change.

She said: “You have to be tenacious, but it has certainly been worthwhile. We can see there are changes being made. I can come to the hospital and feel comfortable speaking with Maria. I feel I am doing something positive for Mia. In a way, this is how I can continue to be her mother, by honouring her memory and protecting other children”

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