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A mum on a mission

Posted Mon 6th Sep 2021 at 14:48
by Emma McNally

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Emma McNally recounts the incredible journey she has been on to fight for right to access the services denied to people living with TS across the UK.

For those in the TS community, Emma McNally is now a household name thanks to incredible efforts to get her petition debated in Parliament. What started as a desperate effort to find support for her son, Emma soon realised that hundreds of families were facing the same lack of services, so for the past 12 months, Emma has been campaigning for change.

We asked Emma to share her story with us.

 

In April 2020, my son, along with many other children, was discharged from Alder Hey Children’s hospital in Liverpool as the neurologist who specialised in Tourette syndrome retired.

This neurologist was covering the whole of Northwest England and North Wales so his departure meant that Northwest families would be left with no pathway to diagnosis and no ongoing support once diagnosed.

Once discharged, I first contacted the hospital as I had thought it was possibly a mistake and couldn’t understand why one person leaving would transpire in patients being discharged! I was told that this neurologist had been the only one who had expertise in TS, so therefore all patients were now to be seen by CAMHS in their local area. However, CAMHS in my locally area don’t treat TS as part of their remit, they deal with mental health only. So, this meant that we had no one to take on our care!

At this point I contacted Tourettes Action to ask for advice and I also looked around for local TS services. I was shocked to find that no such service existed in the whole of the Northwest and shocked that the list of medical professionals was also so small, considering Tourettes affects 1 in 100. This is itself proved the sheer lack of services available!

I contacted my local CCG in St Helens who suggested that I put an official complaint in with Alder Hey hospital, which I did. They came back saying they have no specialist skills in TS, so are not happy to continue the care for patients.

I then sent the complaint on to the parliamentary health ombudsman asking for their advice and what should happen, as many children were now left with no care.

I continued to raise the lack of care with as many people as I could. I contacted Liverpool CCG, St. Helens CCG, ALL parent carer support centres in the northwest, the ADHD foundation, and my local MP.

I continually got told that by raising these issues, it had highlighted a “gap” in the services provided and it was being looked into.

My CCG in St Helens escalated the situation with a request that it be brought to the attention of the STP collaborative commissioning forum and a request that it be looked at regionally from an all-age pathway approach as a regional gap.
My parent rep at the St Helens Carers Centre raised it formally as a gap in provisions with the LA and CCG in St Helens.

The CEO of the ADHD Foundation escalated the issue at national forums and contacted the Embracing Complexity Coalition of Charities and the UK Tourettes Association.

What transpired from my complaining is that there was never a “contract” in place for a TS service at Alder Hey and it would seem that no Northwest CCGs actually pay for a Tourettes service - this is usually treated along with co-existing conditions such as ADHD, ASD etc. Children who suffer from TS as a singular condition are therefore without any support.

In July 2020, my local MP Conor McGinn raised my concerns with the Government Health Ministers.

In Aug 2020 I started a change.org petition asking for more TS specialist services in the North West as I wasn’t appearing to be getting anywhere, so I thought a petition might bring us a step closer to getting help.

Tat the same time I created a Facebook group for other families to join who had also been discharged from Alder Hey. I encouraged other people in the group to write to their MP, CCG and Parent Carer Forum using template emails that I had created.

In October 2020 my MP received a reply from the Health Minister following him contacting them in July. The reply said “Clinical commissioning groups (CCGs) are responsible for commissioning specific services for their local populations and are best placed as clinically led organisations that have both the local knowledge and accountability to make commissioning decisions in the best interests of their patients”, but this isn’t what was happening, no such service was commissioned!

During the month of October 2020 I encouraged everyone I knew to #RunForTourettes #WalkForTourettes or #CycleForTourettes with the aim of spreading awareness of TS and the lack of services available and the change.org petition. We had hundreds of people get on board with this and on October 31st 2020 we turned social media Green with all of our posts.

I worked hard to push the petition as much as possible across social media and in December 2020 the petition reached 10k signatures. I had hoped this would lead to getting a response from the government. But following a zoom meeting with Bill Esterson, an MP from Sefton, I was informed that the government are under no obligation to acknowledge or respond to petitions not created on their official platform! So that led to me creating a new petition asking for more funding for Tourettes, to enable more specialist centres to be created throughout the UK, meaning that EVERYONE could access care, irrespective of their postcode!

In January 2021 I received a response from the parliamentary Health Ombudsman saying “Saint Helen’s CCG is the commissioning body for the area. Liverpool CCG is the commissioning body for the Trust. We are therefore of the view that these organisations should jointly respond to your complaint. We consider this is the best way for you to get a full response to your complaint and we cannot consider your complaint in full until you have a response from them.”

On 13th February 2021 the official government petition went live. I went all out trying to get people to sign the petition and worked hard on a social media campaign to promote the petition as much as I could. Within 1 month we reached the 10k signatures needed to get a response from the government. The response talked about services being the responsibility of local CCGs and how much had been spent on TS research for the last 10 years.

On the 8th March 2021 I received a response from St Helens CCG following the parliamentary health ombudsman contacting them, it said “We have therefore agreed a commitment from our commissioned CAMHS Team, Northwest Boroughs NHS Healthcare Trust (NWBHT) and the Paediatric Service, St Helens and Knowsley Hospital NHS Trust (SKHT), including support from a paediatrician with a special interest in neurology/ epileptology, to work collaboratively to develop a joint local offer and the CCG has provided additional funding to support this offer and enable it to be embedded in the wider CAMHS and Paediatrics offer. NHS St Helens CCG has proposed the following local approach for children and young people who were previously under the care of Alder Hey.”

St. Helens CCG had asked for Alder Hey to supply them with medical records of all children from St Helens who had been discharged from their service, so they could do a desktop review of patients and then subsequently plan a clinic to assess the patient and decide what care would be appropriate going forward for these patients.

It was at this point that I decided I was going to try my best and put everything into getting 100k signatures on the petition, meaning we would secure a debate in Parliament.

I asked everyone in the Facebook group (which now contained people from all over the UK who were struggling to access adequate care for Tourettes) if they would be willing to talk to the media. Then with the list of people I had, I set about contacting local newspapers and media outlets. We had many media articles published in the paper, online, on tv and on the radio.

I tried to coordinate everyone on the Facebook group as much as possible, encouraging everyone to share posts on all social media platforms about the petition.

One of the Facebook group members created a QR Code for the petition and many people did leaflet drops, put the QR Code up in shops, salons, pubs, restaurants, parks, running events and asked people to scan and sign.

During Tourettes awareness month between May 2021 and June 2021 I asked all local schools and businesses to hold a “Wear Green / Teal Day” to spread awareness of Tourettes and the lack of care available, hoping this would urge more people to sign the petition.

On June 30th 2021 I took part in the CANDAL seminar ran by the University of Nottingham to talk about Access to services for people with neurodevelopmental conditions: barriers, facilitators and future goals.

In June 2021 my MP asked the following in Parliament question time:

“To ask the Secretary of State for Health and Social Care, what funding his Department invested through the National Institute for Health Research into research on Tourettes syndrome in each year since 2010. (14173)”


The following Answer was received:

Edward Argar:
Since 2010, £3.3 million has been invested into research on Tourettes syndrome through the National Institute for Health Research.

The following table shows spending on research on Tourettes syndrome in each financial year since 2010.

Year
Research spend
2010/11 £0
2011/12 £149,296
2012/13 £281,996
2013/14 £356,558
2014/15 £204,102
2015/16 £197,677
2016/17 £134,129
2017/18 £313,302
2018/19 £612,658
2019/20 £669,635
2020/21 £362,080

I asked Conor to reply with the following:

  • Figures suggest that TS affects 1 in 100 children, a similar prevalence to autism. So, in comparison what are the figures spent on research for autism?
  • How much is spent on actual “services” for TS, not research. And, in comparison how much is spent on services for autism?
  • It takes on average at least a decade for research to be implemented into practice so right now for families, it doesn't really matter if 3 million or 30 million is spent on research, this doesn't impact our children accessing care.
  • The main problems that families are currently facing is that they don’t have access to any form of care, there are no clinicians who understand the condition in their area, so money needs to be invested into services that families can access.

I am still awaiting a response to this.

On the 13th July 2021 I created an awareness video with parental and child consent, showing a variety of tics to try and give the general public an insight into TS and how debilitating it can be, hoping this would urge people to get behind the campaign.

Lots of us continued to promote the petition across Facebook, Twitter, Instagram and TikTok and on the 16th August the petition closed with 71,035 signatures. We didn’t hit the 100k signature target to secure a debate in Parliament but what we did do during this time was to raise awareness of TS with the general public and also highlight that medical care is extremely patchy across the UK with some areas having no care at all.

So far we have achieved:

  • St Helens CCG have recently started their review clinics to assess all patients discharged from Alder Hey. Following this they will devise a plan of what care is needed and decide whether this can be commissioned locally. This has only come about due to many families complaining to their MP and CCG
  • Wigan CCG are currently looking at the lack services they provide for Tourettes and are working on addressing this
  • My MP is pushing for a debate in Parliament once services resume in September

I am hoping that change is coming and future improvements are in the pipeline. People with TS in many areas of the UK are currently being failed by the lack of provision and this cannot continue.

 

Tourettes Action would like to take this opportunity to thank Emma for her tireless efforts to help imrove the lives of those living with TS. A true inspiration and role model.


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