June 2020

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Disability Rights UK (DRUK) – News In Brief   
To contact Disability Rights UK (DR UK) see www.disabilityrightsuk.org/contact-us

SCAN is conscious that groups represented at the Spelthorne Forum are experiencing a range of challenges at the moment and will continue to do so for at least the next 12 weeks.

Local Organisations with an involvement in Disability and Health support services across Surrey are encouraged to submit regular reports and updates.  Are you arranging ‘virtual’ open meetings and events? – let us help to publicise them.  Nominate any ‘Local Heroes’ on our Forum page.

Please contact me on info@spelthorneaccess.org.uk or text me on 07853 038933. 

We are the leading charity of its kind in the UK. We are run by and for people with lived experience of disability or health conditions.

Our key decisions are made through our members who elect the Board of Trustees: and by our Senior Management Team.

We work with our members to influence national policy on independent living, benefits, education, employment, transport, human rights and other issues – shaping policy through direct experience and expertise.

We also work with our local individual and organisation members to empower and to influence local policy and services.

To contact Disability Rights UK (DR UK) see www.disabilityrightsuk.org/contact-us

Disability Rights UK (DRUK) – News In Brief  

Climbing Blind  
Last year, Paralympic climber Jesse Dufton led a climb up the Old Man of Hoy, an imposing sea stack off the coast of the Orkneys.

The incredible story of Jesse Dufton as he attempts to be the first blind person to lead a climb of the Old Man of Hoy, a sea stack with sheer cliff faces rising out of the sea, in Orkney, Scotland

Jesse was born with 20% central vision.  At four years of age, Jesse was diagnosed with retinitis pigmentosa, a rare genetic disease that breaks down the retina’s cells. When he was 20, Jesse could no longer read. By the time he was 30, he could only detect light, with around a one to two per cent field of view.

As a lifelong climber, what Jesse has achieved flies in the face of adversity, training for world cup events and leading traditional rock climbs with his sight guide and fiancée Molly.

As his sight degenerates, his climbing continues to make remarkable progress. His attempt on the Old Man of Hoy is testimony to his ambition to take on new and greater challenges, despite his devastating condition.

Watch Alastair Lee’s documentary on Jesse’s challenge on the BBC iplayer. https://www.bbc.co.uk/programmes/m000jb7t    This engrossing documentary will make you laugh and cry as it delivers not just a truly gripping climbing story but an inspiring tale of human endeavour and attitude.

TikTok Pulls Posts Mocking Disabled People  
The social media platform TikTok has been under fire for allowing users to post videos of themselves mocking people with autism by producing dances that feature traits such as stimming (self-stimulatory behaviour).

A spokesperson for TikTok told DR UK: "This content does not reflect our values and is against the code of conduct outlined in our Community Guidelines. The hashtag in question has been removed and any similar content that violates our Community Guidelines will also be removed."

YOU DON’T LOOK SICK: ‘My Doctor Said My Symptoms Were Just The After-Effects Of Having Children’ Edited from metro.co.uk    
There are 13.9 million disabled people in the UK – and many of them have an invisible illness. Metro.co.uk publishes weekly stories about living with an invisible illness or hidden disability.

Jane Edwards, 45, from Stamford, Lincolnshire, has a rare autoimmune disease called vasculitis, which means that her immune system attacks her blood vessels and causes inflammation.

The communications manager has two types of the disease. The first is granulomatosis with polyangiitis (GPA), which affects her small blood vessels. This has left lasting damage on her kidneys, eyes, nose and ears. The second is large vessel vasculitis, which has caused inflammation in the main aortic arch straight out of her heart.

Jane, who is author of Chronic Illness: Learning to Live Behind My Smile, tells Metro.co.uk: ‘There is no cure for vasculitis, we live in the hope of a drug-free remission, but this is often difficult to achieve, I haven’t reached this nirvana in eight years. ‘I describe the illness to my children as a volcano, sometimes quiet, sometimes erupting, explaining that the eruption could be a small gurgle or a life-changing blast. All explosions leave damage in their wake.’

She adds: ‘The symptoms of vasculitis can be vague to begin with and I am not sure when the disease started, I had been told I had pneumonia, migraines and just the “after-effects of having children”.’ The turning point came when Jane developed a tooth infection and no matter what her dentist did, it wouldn’t go away.

After my third set of antibiotics, he said: “There is something not right, you need to see your doctor”. The GP did some blood tests and they showed inflammation and signs of infection. The GP told me it probably wasn’t anything serious, but because I had private medical insurance, he could refer me to a ‘general consultant’ to review my history.

‘I never made the private appointment; one day I couldn’t walk up four steps, just total exhaustion. I had lots of blood in my nose, and I was covered in sweat. I was admitted to hospital as an emergency.’

Jane was in hospital for two weeks, where they carried out blood tests, scans and a kidney biopsy to try to find answers. Eventually, fluid was identified around my heart. ‘Nearly half a litre of fluid was taken away, and this finally allowed my heart to start beating loudly, the difference it made was astonishing. Unfortunately, this was a side effect, not a cause. When the mystery was finally solved, the doctor told me about my rare disease which had been identified from the kidney biopsy. I was so relieved that I could identify a cause for how I felt and so glad that I had something I could fight with enthusiasm. I was given a large bag of drugs to take home.’

Jane was told that after three to six months of high dose steroids and immune suppression drugs and then she would reach remission, but after a few months, she did not feel like she was improving. ‘I asked my GP to refer me to the Vasculitis specialised clinic in Addenbrookes hospital. A contrast MRI found that the aortic arch was inflamed at a very dangerous level. I was immediately put on a clinical trial and after a few weeks, it started to work. The inflammation has reduced, but there is damage left. I am so pleased I had the strength to refer myself to the experts.

Eight years on and I still take between 15-20 tablets a day (plus a couple of vitamins) to control the disease. I have terrible side effects from the steroids – puffy face, weight gain, mood swings and damage creeping into my bones.’

Because of her condition, Jane uses the lift instead of the stairs but says that she feels like people judge her because she doesn’t look ill. She says: ‘It is common to get dirty looks when the lifts are full. My daughter will then talk loudly “how are you feeling now?”.

The judgment of others really hurts, I feel I am judged to be fat and lazy as the steroid moon face makes me look enormous. It is the final insult of the disease.’

Throughout everything, Jane has had lots of support from the Vasculitis UK team https://www.vasculitis.org.uk/  the only charity dedicated to raising awareness of the condition. She says: ‘They have been amazing. They are all volunteers but they are incredible.

Student nurse Lauren Barker, 22, spotted a white shine on her son Frankie’s left pupil in photographs when he was just four months old. At first she thought nothing of it, but when the white reflex kept showing up she raised the issue in a doctor’s appointment in July 2019. After eight months of consultation, scans confirmed that little Frankie had cancerous tumours in both eyes.

In March 2020, he was diagnosed with bilateral retinoblastoma, a rare and aggressive type of cancer. Since his diagnoses, Frankie has received laser treatment, chemotherapy and cryotherapy – a treatment designed to freeze tumours. But if the more severe cancer in his left eye advances, the only option may be to remove the toddler’s eye.

Frankie looks medically well. You wouldn’t know he had cancer if you saw him. ‘He’s just a typical two-year-old. He’s energetic, adventurous and boisterous. He’s incredibly strong for his age. ‘But I knew there was something not quite right as he kept standing on things that were in front of him and he banged his head often.’

As the cancer is caused by a mutation in a retinoblastoma suppression gene, Frankie is at a greater risk of developing bone cancer and potentially lung cancer in the future. Lauren also worries that Frankie could become blind.

The heartbroken mum said: ‘The scary fact is that the cancer is in both his eyes. Of course, it’s a horrible situation but if it is one eye, you can accept it as he will still be able to see out of the right eye if the left eye is removed. Lauren hopes Frankie’s vision in his right eye will remain stable so he will be able to continue playing football. For now, Frankie is just concentrating on his treatments at the hospital. Lauren said: ‘I hope the treatments can reduce the tumours or control them at least so Frankie has a bit more of a life.

The only time he leaves the house now is to go to the hospital – which isn’t what a two-year-old shouldn’t be doing.’

Other symptoms of retinoblastoma include squinting, a change in the iris colour or a red and swollen eye without infection. Lauren urges parents who notice any of these symptoms to talk to a doctor. She said: ‘It’s not just a white glow, there are other symptoms of retinoblastoma. If you are worried about your child’s eye, then I’d advise just to get it checked out. ‘The longer you leave it, the worse it gets and the tumours can grow.’  

CORONAVIRUS: Disabled Children’s Education Rights Must Be Restored Before Any Formal Return To School – Edited from https://www.specialneedsjungle.com/author/special-needs-jungle/   
The majority of parents with disabled children we have heard from say despite this, they will still not be sending their child back until it is safe for everyone. Many have found that since their child has been at home, the anxiety that was an overwhelming problem while they were at school has lessened or vanished completely. Now, the prospect of being forced back to the place that caused the anxiety to start with fills them with dread.

The Department for Education’s chief scientific adviser Osama Rahman has admitted he has not assessed whether guidance on reopening schools is effective, adding the current advice is “draft” and “will be developed”.

The Government seem to think that just a few children here and there are without easy access to computers and internet access. Wrong. Millions of families only have access via a parent's mobile phone which is often pay-as-you-go and which they won't be able to use for education purposes anyway. They don't have printers. They often don't have landlines. They definitely don't have tablets.

Thank you to everyone in schools, LA SEND and social care departments, voluntary services (and of course, NHS staff), who are working incredibly hard to support disabled children, young people and their families. I know that every parent appreciates all you are doing. When we express anger or criticism, please understand it is not at you as individuals; it is at the system and those running it, who must think harder about the kind of world they want to live in.

Deaf children are finding accessing online support impossible including lack of signing and captions. For them, widespread wearing of face masks will be a disaster as it will prevent them from lip-reading

If it's okay for disabled children to be back at school, then local authorities must ensure their needs are met. Without this absolute legal duty being reinstated, this is unlikely to happen. Even with the duty it often doesn't, so it is foolhardy and dangerous to expect it to happen without the legal requirement. Otherwise, you are setting up children with additional needs to fail.  

Updated information from the National Shielding Programme  
The National Shielding Programme has provided information about individuals who need to shield as well as those who no longer need to shield and gives information on:

•       How individuals are identified as needing shielding

•       What role the GPs and hospital clinicians provide

•       How a patient is told they no longer need to shield.

Guidance on shielding can be found on https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

If you’re clinically extremely vulnerable, you’re strongly advised to stay at home at all times and avoid any face-to-face contact to protect yourself.

The Government is currently advising people to shield until 30 June 2020 and is regularly monitoring this position.

Age UK Surrey Offering Help To Get Online  
The importance of being online and able to manage with communication tools like email, Skype and Zoom has been heightened recently. Age UK Surrey computer drop-in volunteers are offering a free telephone digital help service, which is arranged at a time and day that’s mutually convenient and aims to help residents get online.

The charity is also offering some of their classes virtually including Men in Sheds, Haslemere Lunch Club and the Falls Prevention Class.  The Information and Advice Session will continue to take place virtually every Thursday at 2pm for anyone over 50 years of age, and carers.

Contact: 01483 503414 (Mon - Fri, 9am - 4.45pm)  Email: enquiries@ageuksurrey.org.uk   or complete the Enquiry form at https://www.ageuk.org.uk/surrey/activities-and-events/computer-drop-in-centre/  

Wide Pavements And New Cycle Paths Could Help Unlock Surrey  
Surrey County Council is working to help pedestrians and cyclists so that they can stay safe and social distance while they are out and about and taking exercise.

The Government has given councils emergency measures during the coronavirus pandemic to temporarily create wider pavements and new cycle paths to ensure people can keep a two metre distance from people outside their households and continue to use alternative ways to travel. Plans are progressing in Farnham, Godalming and Reigate.

Next Steps For Specialist Emergency Care Hospital Consultation  
Improving Healthcare Together 2020 to 2030 (IHT) has published the findings of the consultation which was held between 8 January and 1 April 2020.

The report is an independent analysis of all consultation feedback on the proposals to address the challenges facing Epsom and St Helier University Hospitals NHS Trust and will be used as one of the pieces of evidence, alongside other evidence to inform South West London and Surrey Heartlands Clinical Commissioning Groups’ decision making process.

Next steps will be to consider all the feedback, which showed broad support for the proposed clinical model and importantly to undertake further work to explore some of the key themes raised before any final decisions are made.

For further information email: hello@improvinghealthcaretogether.org.uk

Samaritans Self Help App Can Help You Keep Track Of How You Are Feeling And More  
The Samaritans Self Help app can help track people’s mood, create a safety plan to keep people safe in a crisis, keep track of things that make people feel better and practice techniques to help people challenge and cope with difficult feelings.

Samaritans Self-Help app is a web application that can be used online in a browser or installed on a computer or smartphone. It's not monitored by Samaritans volunteers, and Samaritans can't see what is written in it.  

Surrey GP Carers Registration Survey Report published  
The report gives details on the findings of the annual survey which was circulated to all GP practices in Surrey in January 2020, with a closing date of the end of March 2020.  The response rate to the survey this year was low undoubtedly due to coronavirus.

Key findings of the report include the following:

•       The overall number of carers in Surrey registered with their GP has risen to 28,667 – an increase of 3.96% on the previous year’s total of 27,575.

•       The number of Black and Asian Minority Ethnic (BAME) carer numbers increased to 2,086 from the previous year’s total of 1,442.  This represents an increase of 30.87%.  Although a welcome improvement this only represents 11% of the overall BAME carer population (Surrey BAME population 16.5%)

Local Digital Shared Care Record For Health And Care Professionals  
The Surrey Care Record, which is managed by the Surrey Heartlands Clinical Commissioning Group is a local digital shared care record for health and care professionals across Surrey Heartlands. This goes live on 1 June 2020. 

Surrey Care Record allows the secured sharing of health and care data between authorised health and care professionals in order to deliver safer, quicker, more personalised and more co-ordinated local health and care services.

Improved sharing of information includes tests and results, medication and knowledge of allergies. It will also ensure that staff with appropriate authorisation have access to people’s information, that care details are kept up-to-date and accurate, and reduces the risk of errors and delays to people’s care.

Carers Week During 8-14 June 2020’    
For details visit our Features Page