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14 September 2019

Fatima Elguenuni is a Family Therapist and Islamic psychotherapist by background and has family from Grenfell Tower. She works as a cultural consultant for CNWL (she worked for many years in CNWL Child and Adolescent Mental Health services) and this is her monthly column of thoughts and questions about what next? Where next?

“On Friday 4 October I gave a Ted Talk!  It’s not yet available on line but am told it will be soon.

TedXNHS organiser Antony James says, “The NHS flows through all our lives: a place of work, a place to heal or a setting for many of lives most joyous and most difficult moments. Uniting all of this are people, from patients, to nurses, to managers, people, who together create the unique system that is the NHS. Each of these people has a story, an experience to share or wisdom to impart, with their diversity of background, thought and ideas being one of healthcare’s greatest assets.”

But I also know that it can be frustrating – even irritating – in how it grapples with events and that things will go wrong as it flexes to respond – but how it responds is what’s most important to me, for this community.

Though I have made given talks and presentations before this one was particularly nerve wracking and exciting at the same time; but reliving 14 June 2017 took a toll too – as it does for everyone directly involved.

It is very personal of course but I was also trying to generalise about where we in the community and in the NHS are now; how to get to where we want to be?

My son’s, wife and their three children, then aged 11, 8 and 4, managed to escape; they emerged from the tower, carried by fire fighters; coughing but alive. All I recall was crying out to God in gratitude and relief.

But they were alive. It was a miracle but sadly, that miracle wasn’t the same for everyone.

72 people perished in worst UK residential fire since the Second World War and I observed that was the equivalent of the first 10 rows of the room; so I asked them to stand, to see what that number is like.

The level of community frustration and anger with local systems was palpable.

Three to four days after the fire, I was at my grandchildren’s hospital bedside when I received a call from a former colleague, from CNWL, asking me if I would consider helping with the response and help them reach out the traumatised community.

I felt like I could either take a step back and of course deal with my own family’s difficulties, or I could try and use whatever expertise I had from my experience as a mental health professional to support the community.

So at the end of that June 2017 I decided I had to support the response effort.

More critically I really wanted to inspire others by sharing my reflections of finding hope, generosity, compassion and a strong sense of community leadership, I wanted to share examples of how ordinary people can be mobilised into action in connecting with their neighbours their colleagues, their community in being brave enough to challenge inequality and injustice wherever it exists and certainly beyond the boundaries of Grenfell and beyond the borough.

I enjoyed my work in a clinic not far from the Tower but I always faced challenges in trying to deliver mental health provision to a community that didn’t understand it and sometimes didn’t want mainstream mental health services.

I was also painfully aware that the mental health delivery model that was offered to the Grenfell community was disordered, chaotic and disconnected.

I viewed myself as someone who has a lived experience of service user and service provider. Using that experience I was able to broker a meeting between the NHS, the local authorities and the representatives of bereaved and survivors Grenfell United.

Systems don’t always encourage people to use their authentic voice and position. It takes people with courage and vision to step outside of the safety of their organisational procedures.

Survivors wanted to visit their homes to retrieve some their belongings and say goodbye. Bereaved family members wanted to pay their respects, visit where their loved ones lived and died

Initially, there were many concerns amongst all professionals about this request; there were many problems and risks to consider.

For the police: the Tower was still a crime scene; for the NHS: this was not your normal Trauma Focused CBT visit, there were insurance issues and the building was unsafe.

But families continued to press for the visits. Eventually Systems spoke to each other co-ordinated with efforts on the ground to make the visits happen. Over 200 visits were made to the Tower. It was such a positive example of what could happen if people worked together.

One visitor told me; “As I was going up the stairwell I was very nervous and anxious and I turned around and I saw five different professionals were with me. I thought to myself look at all these people taking the risk to support me.  I felt safe and cared for. It changed my view and I began to form trust and eventually I started to seek psychological support.”

Not only were the visits beneficial for the survivors and relatives, professionals felt privileged and humbled to share these experiences with their patients or clients.

Over the past two years, I have seen the community move from a position of distrust of the NHS as a statutory organisation to a “very good” partnership where people are more willing to consider taking up treatment.

One of the things that this tragedy has unearthed is that so many people, who have felt ignored and silenced for so many years, have now found a strong and powerful voice. They are demanding to be listened to.

Ordinary people who endured the horror of that night have found themselves in both a powerful and strategic positions. They have silently marched for justice lobbied and marched for key governmental policy changes both locally and nationally.

Grenfell United – and others – has been working incredibly hard trying to bridge the gap between the central Government, the NHS, the local council and North Kensington residents. Sitting around tables with directors, senior managers, clinical leads, politicians, and commissioners.

There’s still an incredible amount of work to do; the community is severely traumatised. There is still a lot of anger, however there is still potential and possibilities for really, good things to come out of this.

We’re all human beings and if we can have respect for that humanity we can work together to make sure this never happens again.

My grandchildren had to fight and use all their might to escape the fire. Their courage and determination is what drives and inspires me to get up every morning.

I do not want them being defined as victims of Grenfell or grow up thinking that fire happened because people didn’t care about them; my biggest wish is that they inherit a positive community 

So I leave you with three things I have learnt:

To the system:
To err is human, we as a community know and understand, so be honest and authentic enough to acknowledge it.

To the community:
Find your voice as a collective, connect together and find a shared narrative; change will happen and can only come from the grassroots. 

A message for all
Trust and compassion are the only currency that goes beyond everything, so invest in it, build it, and harvest it; nothing generates more return on investment.”