People with learning disabilities are dying 25 years younger than the general population

People with learning disabilities are dying 25 years younger than the general population

In this blog, Mary Schumm, Certitude’s Director of Learning Disabilities, reflects on the shocking things she has learnt from the recent Learning Disability Mortality Review report and how we can do better moving forward.

Fact: people with learning disabilities face poorer health outcomes and shorter lifespans than the general population.
The Learning Disability Mortality Review (LeDer) programme was set up to look at the causes of death for people with learning disabilities. It looks at how we can change services locally and nationally to reduce health inequalities. By finding out more about why people die we can understand what needs to change to make a different in people’s lives. 
The fourth and latest LeDeR report has just been published and makes for stark reading. The latest report told me a number of things I already knew, and some that I didn’t.
Shocking factors
I did know that on average people with learning disabilities die around 25 years younger than the general population (22 years younger for males, 27 years younger for females). Or read another way – 85% of the general population in the UK make it to 65 and over compared to only 37% of people with a learning disability. 
I also knew that people with a learning disability from BAME groups die at disproportionately younger ages than white British people. I didn’t know the actual statistics: of those who died in childhood (ages 4-17 years), 43% were from BAME groups. This is a shocking statistic.
Treatable health conditions
I knew that people with learning disabilities were more likely to die from treatable health conditions than the general population. But the actual statistics? A third (34%) of deaths of people with learning disabilities in 2019/2020 were from treatable medical causes, compared to 8% in the general population – a four-fold difference. Again, this is shocking. 
I did know that one of the most common causes of death in people with a learning disability is pneumonia and aspiration pneumonia. I didn’t know that tooth decay caused by poor oral care is associated with pneumonia. This is due to increased levels of oral bacteria in the saliva. Tooth decay is a treatable condition. The risk can be minimised in the first place with good oral care. 
I did know a little bit about sepsis. Sepsis is something called septicaemia or blood poisoning. It is a life-threatening reaction to an infection. It happens when your immune system overreacts to an infection and starts to damage your body’s own tissues and organs. In 2018, sepsis was identified as the second leading cause of death (of those reviewed as part of the LeDeR programme) for people with learning disabilities. Very sadly, I also know of several people we have supported over the last few years who have died after having sepsis.

What we can do to address these stark inequalities

At Certitude, we take the health and wellbeing of people with learning disabilities who we support very seriously. We recognise that we play a vital role in ensuring that people with learning disabilities receive the same standard of health care as everybody else. It is our responsibility to learn about the health conditions people have or may be prone to so we can ensure the best health outcomes for them.  
We must advocate strongly, ask questions, have open dialogues and work in partnership with health professionals. But we must also challenge decisions we don’t feel are right and have the confidence to seek second opinions. 
We are developing a health and wellbeing policy that sets out how to support people to have the best health outcomes. We are re-establishing our Health Group to include people with learning disabilities and family members. The Health Group will generate ideas to support people to improve their health and wellbeing. It will also review the actions we are taking on this and hold us to account. 
We need to do everything we can to turn the tide on the terrible findings set out in the LeDer report so we can support people with learning disabilities to lead healthier, happier and longer lives. NHS England has released an Action from Learning report that we will be referencing to make sure we learn from these new findings.
 
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A testing time for learning disabilities service

A testing time for learning disabilities service

After months in lockdown Melissa Layton, our Learning Disabilities Head of Service, reflects on her COVID-19 experience and her hopes – and fears – for the future.

At the beginning of this pandemic – which feels like a long time ago – it all felt very, very scary. It was certainly, the biggest challenge I’ve ever faced working in social care. Early on, there was a lot of illness and suspected illness; at one stage over half the staff in teams I am responsible for were off self-isolating or sick.
We were scared for people we support, many of whom have multiple additional health conditions – and staff were understandably frightened for themselves. It was a daunting time for everyone. At one point we had a member of staff and a person they support both seriously ill in hospital at the same time. Like everyone else we experienced a sense of panic, but we worked through it and kept going.

Response to the pandemic
When I look back on those first few weeks it feels good to know that we did the right things as an organisation. We locked down quickly, we set up an internal COVID-19 hub, we developed a frequently asked questions document for staff and families, and we implemented procedures quickly. We made sure we were always well stocked with personal protective equipment (PPE) so, fortunately, that wasn’t a problem.
However, we have been – and continue to be – very frustrated by the lack of access to adequate testing. 
Testing has been a problem across health and social care services from the beginning of the pandemic and although it is largely resolved for NHS staff, that is not the case for social care. 
People with learning disabilities are only eligible for testing if they live in a ‘registered care home’, not if they are in ‘supported living.’ Supported living is the way we support the majority of people – they and their staff teams’ need for testing is no less important or necessary based on the support descriptor. 
While walk-in testing centres have begun opening which our staff can access, for people we support this would be an extremely stressful situation and they should be able to be tested at home to minimise distress. 

Issues with test kits 
In the last few weeks we have been sent some test kits for people living in registered care but this presents its own challenges. 
The only training we have been able to access is online and some of the kits have arrived with no instructions and no details of where to send them once they’re complete. Tests need to be carried out by properly trained staff to avoid false negatives and any additional distress to people. Over the past few weeks I’ve spent many hours on the phone to local authorities, Public Health England and our local Hounslow MP, Ruth Cadbury, trying to get more information. 
Right now, the situation is calmer. Both staff and the people we support are well and beginning to enjoy seeing family and friends again, but the prospect of a second wave is worrying. We never want to find ourselves facing a situation like we did in March and early April – we need clear guidance from Public Health England.
 

The Mayor of Hounslow visit

The Mayor of Hounslow visit

The Mayor of Hounslow, Councillor Tony Louki, visited one of our respite services last week.

During the socially distanced visit, the Mayor gave the residents a geranium as part of his ‘Gift a Geranium’ initiative and said he was delighted to come out and meet people, including Short Breaks manager, Juan, and Julie who is currently staying there. 

The ‘Gift a Geranium’ campaign aims to acknowledge the hard work people working in social care have been doing across the borough over the last few months. Hounslow residents are being encouraged to leave a geranium on doorsteps to show their appreciation.

One of Certitude’s Heads of Service, Melissa Layton, met with Mayor during his visit and said:

“It was lovely having the Mayor of Hounslow visit one of our houses today. His visit provided a welcome pick-me-up during this time and everyone here is looking forward to planting out their special geranium!”

And due to a small mistake, the Mayor also paid an unexpected visit to 49a Star Road the day before, where he received an impromptu welcome from Wayne and a song from Lavinia!

Our Voices

Our Voices

Covid-19: Valuable voices not vulnerable people

Certitude has teamed up with four other social care providers – Camphill Village Trust, Choice Support, MacIntyre and United Response – to launch an online initiative to share the voices and creativity of people with learning disabilities, autism and mental health support needs during lockdown.
 
Our Voices shares a range of experiences by documenting the ways people have coped, reflected upon and adapted to the lockdown with creativity, humour and humility. Through a website and a YouTube channel, the initiative provides a platform for people to tell their stories and get their voices heard. On the website, people can watch video diaries and view creative projects produced during lockdown and beyond.

Aisling Duffy, Certitude CEO says:
“The impact of Covid-19 has affected every part of our lives; our mental and physical health, everyday activities and human interactions. Over the last three months, it’s been incredible to see how people have coped. We’ve witnessed people making positive changes, thriving under lockdown and seeking opportunities to learn and grow. Truly awe-inspiring.”

Our Voices features people the charities support, family members and support staff. It launches on 6th July 2020 and new content will continue to be added in the coming weeks and months.

To view the videos and creative work visit the Our Voices website.
For press enquiries please contact Kirsty Stuart on kstuart@certitude.london or 07395 283136. 

You! Me! Us! We!

You! Me! Us! We!

This year’s annual London Pride Parade was due to take place in June, but as with many things planned in our calendars over recent months, it has been rescheduled to take place next year.

In February, the event organisers had announced this year’s theme was ‘You! Me! Us! We!’, saying that, “In a climate where LGBT+ communities feel more divided than ever, this year’s theme calls out the crucial need for allyship in order to heal rifts between groups … The latest figures show almost a third of LGBT+ people have experienced some form of discrimination from others in their local LGBT+ community. In comparison, three in five black LGBT+ people have experienced discrimination from other queer people because of their ethnicity.”

To stand in solidarity with others

The term ‘allyship’ means to stand in solidarity with others. It is about doing your bit to challenge discrimination and show your support for a cause. That cause might not directly impact on you personally, but being an ally means that you give your support to make/ campaign for the changes needed.

Since the Pride organisers made their announcement, we have witnessed the atrocious killing of George Floyd and the uproar it has rightly caused around the world, with a swelling of support for the Black Lives Matter movement. The Pride statistics show that discrimination can happen everywhere; even in LGBTQ+ spaces where we should all feel safe and accepted. 

Make an act of allyship

I attended the Brighton Black Lives Matter march at the weekend and was impressed to see the biggest turnout I’ve ever witnessed in the city for a ‘political’ event. Whole streets were filled with thousands of people supporting Black Lives Matter and carrying anti-racist banners, as well as ‘Black Trans Lives Matter’ and ‘Black Queer Lives Matter’.

In line with the general population of the city, most demonstrators were white; they were showing that they were allies to the cause and marching in solidarity against racist discrimination and violence.

The Pride organisers have asked everyone who would have taken part in the festivities this month to ‘make an act of allyship … As LGBT+ people, especially those from marginalised communities, continue to come under attack from many sides”. You can find out more on the Pride website.

This week, it’s also Learning Disability Pride week and you can find out more information on the Learning Disability Pride website.

– May Lee, Head of Practice Development

Black Lives Matter

Black Lives Matter

It’s been truly sickening to bear witness to the horrific killing of George Floyd in the US. Racism and discrimination are not just issues for the US, as has been amplified so clearly in protests over the past 10 days in the UK too. 


The detrimental impacts of racial inequality affecting Black, Asian and Minority Ethnic (BAME) colleagues, people we support, families, neighbours, friends and communities are clear to be seen. The disproportionate impact of Covid-19 set out in the recent Public Health England report is extremely troubling and adds to our collective concern.


Certitude stands in solidarity with those who want to bring about change. While we are rightly proud of the racial diversity in Certitude, we know that racism and discrimination impact the lives of people across Certitude – our colleagues, people we support and families. 


I have been talking to various people across Certitude over the past week and alongside a shared sense of deep injustice, shock and sadness there is a real commitment to action – ‘deeds not words’.


Last year the Certitude Board approved a revised Equality, Diversity and Inclusion strategy. As part of this a BAME network has been established to support, challenge and drive Certitude forward. Feedback from this group will drive our action.


The chair of the forum has been talking to other colleagues and is inviting further insights and comments – and importantly the action we want to see in Certitude. We know we have an important role to listen, challenge and act to eradicate systemic racism and discrimination. 


We will demonstrate our commitment to action even when the media light is not shining so brightly – to challenge each other and the system that enables discrimination and to support an inclusive, values drive society where race is celebrated. 


This is the time for all of us to listen, learn and be supported to talk about and stand up to racism and discrimination.

 

– Aisling Duffy, Chief Executive

Certitude’s Response to Easing the Lockdown

Certitude’s Response to Easing the Lockdown

Certitude remains driven by its mission to keep everyone we support and colleagues as safe and well as possible during the coronavirus pandemic. 

We recognise that there are many challenges in coming out of lockdown and as such we will implement any changes very carefully, seeking the views of people where we possibly can and communicating any changes to those impacted by them. 

Our CEO, Aisling Duffy explains our position on easing the lockdown in the below video. For further information, please read:

People across Certitude have adapted with creativity and compassion to the enormous demand Covid-19 has placed on everyone. We now need to prepare for an extended period of living with and managing the threat from this virus. We will do this in a planned and responsive way, adapting as required to new learning so together we can help keep ourselves and each other as safe and well as possible. 

Thank you to everyone for your continued adherence to guidance and your ongoing commitment and support. 

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Working for a Mental Health Crisis Helpline During Coronavirus Lockdown

Working for a Mental Health Crisis Helpline During Coronavirus Lockdown

Solidarity in a Crisis (SIAC) is Certitude’s out-of-hours mental health crisis helpline in South London. 

Carolin Sternecker is one of our Peer Supporters with the service and has been supporting callers during the Covid-19 lockdown. She talked to us about what impact the lockdown has had on people’s mental health…

Carolin Sternecker, a SIAC Peer Support

Isolation in lockdown

All sorts of people are calling us right now; different ages, men and women, people who have had previous mental health issues and people who haven’t. Most of the calls are about the consequence of the lockdown rather than the fear of the virus itself. Isolation is the biggest challenge and it’s causing a great deal of anxiety. 
Not being able to get out to socialise or participate in activities is a real problem. If you are stuck in London in a flat with no garden or balcony and you are frightened to leave the house because you have an underlying health issues – plus no one can visit – it’s very hard. 
People are lonely and missing friends, family and workmates. We operate the helpline in the evenings and weekends because this is when people are most likely to feel overwhelmed and experience a mental health crisis. 
Our callers range from feeling anxious to suicidal.

Overwhelmed

I know from SIAC’s monthly report that calls to the helpline are up over 80% compared to January this year and that the biggest increase is from younger people and men. 

So many people are overwhelmed by worries about housing, jobs and money, and all their usual support systems have broken down.

Not getting on with people we live with is also a problem. I recently took a call from a woman who had moved into a new shared house before the lockdown and now she feels stuck with a group of strangers. 
Lockdown is also proving a problem for couples living together where things aren’t working out – a situation made so much worse because they can’t let off steam in the usual ways, for example meeting friends or going to the gym. I have certainly noticed more domestic violence calls – affecting both men and women.

Reassurance in routine

My job is to listen and reassure and then signpost people to other specialist services such as domestic abuse or substance abuse charities. Sometimes people are ready for advice and sometimes they just want someone to listen.
Speaking with someone who has lived experience helps support recovery by giving hope. Lived experience provides peer-supporters with the empathy and knowledge required to help someone navigate statutory and other support services. By bearing witness to what individuals are going through and sharing experiences, we help develop confidence and knowledge of support services. Our approach encourages people to speak without having to monitor their language or feel there is a doctor-patient hierarchy. 
We also reassure our callers that it’s ‘ok not to be ok’ and encourage people to contact friends, family and support services if they feel like they would benefit from a little extra help. We are still working hard to reduce the stigma that accompanies feelings of needing support with mental health.

If they are ready, the most common piece of advice I am giving right now is encouraging people to commit to a daily routine which includes regular exercise and a consistent sleep routine. 

So many people feel they have nothing to get up for but having a routine can make a real difference, providing purpose and focus.
Solidarity in a Crisis helpline:
Freephone: 0300 123 1922
Text: 07889756087 or 07889756083
Opening times:
Monday to Friday: 6.00PM-12.00AM
Saturday and Sunday: 12.00PM-12.00AM
 
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Thank you for your help

Thank you for your help

Since being restricted to our homes, and with the closure of our usual activities, life has been challenging. We have been bowled over by the demonstration of creativity, patience and love from people we support, our incredible support teams, central services staff, volunteers – and people like you, who continue to support us during this time.

You may have seen or taken part in the 2.6 Challenge a few weeks ago, where we raised around £2000, which we put towards making life easier and happier for people with learning disabilities, autism and mental health support needs across the capital. 

People like you have donated time, money and/or expertise because you believe, as we do, that everybody deserves the right to a good life.

Your support is already making a difference – just look at some of these kind donations, which are currently making their way across London to people who will really appreciate it.

Your support and belief that everyone has the right to live a good life makes us hopeful and positive for the future. 

We are so grateful, and wanted to say a huge thank you to every single person who has donated, spread the word or cheered us on from home. 

Thank you so much! We can’t wait for a time when we can all be together again – going to day centres, attending events, enjoying simple visits – but for now, this has all been a huge help. 


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Calls to mental health crisis helpline in London almost double during lockdown

Calls to mental health crisis helpline in London almost double during lockdown

Solidarity in a Crisis, which operates an out-of-hours mental health crisis helpline in Lambeth, Lewisham and Southwark has seen a dramatic rise in calls since the beginning of the lockdown.

 

In April, calls increased by 46% compared to February and 87% compared to January 2020. Calls to the helpline are expected to be even higher in May, representing a dramatic increase in the number of Londoners feeling overwhelmed during the pandemic.

 

The largest increase in calls came from those reporting anxiety with many individuals attributing this to Covid-19 and employment. Most respondents listed anxiety, depression and emotional distress at the primary reason for their call. The number of callers increased across most age bandings, with calls from individuals aged between 18-25 and 65+ representing the largest increases. There has also been a significant increase in calls from men in the last two months, although women are still four times more likely to call for help.


Alexander Robertson, who manages our Solidarity in a Crisis service, says:

 

“We are seeing that many more people than usual – and particularly younger people – are feeling overwhelmed by multiple issues. They are worried about housing, jobs and financial issues and they don’t know where to go for support. Our peer supporters are able to talk people through their initial crisis and then signpost them towards a range of different services. 


We operate out-of-hours – in the evenings and at weekends – as this is when people tend to feel more overwhelmed. I would urge anyone living in the areas we cover, who is feeling like they are not coping, to give us a ring. Our highly-trained peer supporters are ready to listen and bring their personal experience of mental health issues to any situations.” 

 
 
Solidarity in a Crisis helpline:
Freephone: 0300 123 1922
Text: 07889756087 or 07889756083
Opening times:
Monday to Friday: 6.00PM-12.00AM
Saturday and Sunday: 12.00PM-12.00AM