October 2020 - 2nd Issue

Previous Newsletters can be found on 2020 newsletters, 2020 COVID Newsletters or the Archived Newsletters pages

This could possibly be our last Mid Month Edition of the Newsletter.  Any changes to COVID related news will continue to be issued as soon as possible afer it has been published.

The Musculoskeletal (MSK) Physiotherapy and Hand Therapy Team at Ashford and St Peter’s Hospitals NHS Foundation Trust has been nominated for the Future NHS Award at the NHS Parliamentary Awards.

Dr Ben Spencer, MP for Runnymede and Weybridge, has nominated the team. He said: “I am delighted to submit this nomination for the NHS Parliamentary Awards. The innovative approach taken by the Musculoskeletal Physiotherapy and Hand Therapy Teams has not only provided improved care options for local residents despite Covid restrictions, but it also has the ability to bring real improvements to treatment and support across the NHS. 

Leon Palmer-Wilson, Acting Clinical Co-Lead for MSK Physiotherapy at the Trust, said:  “Despite the demands of COVID-19, the teams operated at full capacity and supported colleagues throughout the Trust, offering 1500 new monthly appointments. Their virtual physiotherapy skills were utilised through treating patients from community stroke and orthopaedic teams, whose care was affected by the reduction of services during lockdown. With supporting vulnerable and elderly patients remotely a clear priority, the teams also liaised with families to assist with their technological needs and introduced new virtual classes specifically for patients at risk of general deconditioning due to shielding.

Patients and staff have acknowledged the benefits of virtual working, which include: no travel; no parking costs; decreased risk of exposure to COVID-19; shorter waiting times; environmentally friendly.

The Future NHS Award is one of the 10 categories at the NHS Parliamentary Awards. The awards recognise those working for and with the NHS, who go above and beyond to make the NHS a better service. MPs can nominate one individual or team for each of the categories.

The winners will be presented with their awards in Parliament on 7 July 2021. https://www.ashfordstpeters.nhs.uk/latest-news/2559-physiotherapy-team-nominated-for-nhs-parliamentary-award

The new car park at St Peter’s Hospitals NHS Foundation Trust has opened with 694 parking spaces that includes 8 charging stations for electric vehicles and 36 Blue Badge bays.  Parking is spread over 7 half floors (0.5 to 3.5) and connects directly to the hospital’s main entrance at level 2. The new car park has been built on the footprint of the hospital’s existing parking area. 

There is CCTV, coloured way-finding signage and an intelligent LED lighting system, all aimed at making the car park a safe and secure environment.  The lighting system has also been designed to minimise light pollution to adjacent woodlands and headlight shields help reduce disturbance to buildings and wildlife habitats nearby.

SCAN Comments:  
Paragraph 5.60 of the Department Of Health's 'Health Technical Memorandum 07-03 NHS car-parking management: environment and sustainability' states that : "Although there is no statutory requirement under the Equality Act 2010 to make provision for a certain number of disabled parking bays within a car-park, local planning conditions often stipulate a required number, and this averages around 4–6% of car-park capacity. However, NHS organisations should increase this figure, as it is likely that a higher percentage of disabled users will attend an NHS site compared with other site."

It appears that the new car park at St Peter's Hospital provides just over 5% of the parking spaces for Blue Badge holders.  On the whole the information suggests that Blue Badge holders will have a difficult time in finding suitable parking spaces even if there are other designated spaces at different locations on the hospital grounds.  

Surrey Adult Social Care Team Current Special Bulletin

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

is open daily from 11:00 to 15:00 Tuesday to Sunday CLOSED MONDAYS.

Serving a selection of our ‘Signature’ homemade cakes, scones, cream teas, sandwiches and soup as well as teas, coffees, soft drinks, beers & wine.

Initially, we will be using environmentally friendly and recyclable packaging and will only be able to accept contactless card or mobile payments.  We want to personally assure you that your welfare is our highest priority so will be following rigorous hygiene procedures as well as the latest published guidelines on social distancing.

The Sunbury Gallery has full wheelchair access and a disabled toilet. A wheelchair is also available on request. Please let us know if you require any help before your visit.  For visitors with visual or hearing impairments, we offer a tactile guide to the embroidery and an audio guide and transcript.  In addition, a tactile map of the Walled Garden is also available on request.

Parking is available at The Walled Garden and also at the Orchard Meadow car park which is accessed from The Avenue. A footpath across the top of the meadow connects with the Walled Garden.  The first hour is free if your visit is short, otherwise it is £2.00 all day. 

If you would like to speak to someone concerning your visit, please call 01932 788101 or email info@sunburygallery.org. Visit our web site for further details  https://www.sunburygallery.org/

YOU DON’T LOOK SICK: ‘I Have MS But I Get Told To Give Up My Train Seat’ - Edited from an archived series published in Metro.co.uk  
There are 13.9 million disabled people in the UK, but for many of them, you would have no idea anything is wrong. They’re told ‘but you don’t look sick’ because they don’t use a wheelchair or something people associate with disability.

This series is a look at what it’s really like to live with a disability or illness that no one can see, discussing the symptoms that affect their lives every day and how they are treated when they are out in public.

Amelia Ayres, 24, from Plymouth, has Relapsing, Remitting, Multiple Sclerosis, a condition that can affect the brain and/or spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance. It is an autoimmune condition which means that something has gone wrong and the body starts to attack the brain and the spinal cord. It’s a lifelong condition that can sometimes cause serious disability, although it can occasionally be mild.

Although some days, Amelia is barely able to move out of bed, she is often challenged when she is out and has been asked to move from priority seats on the train or challenged over using a disabled parking space because she doesn’t ‘look’ disabled. She explains: ‘I look ‘normal’ and find it incredibly frustrating that nobody can see my symptoms. I was sat in a disabled seat on a train when a tall man looked at me and said “I need you to move so I can sit there as I have long legs.” ‘My mum looked at the man and said “there’s a disabled sign, my daughter has MS and is disabled” and he walked away tutting. After that I got my MS card out and put it on the table in case anyone else questioned my right to sit there. I was so angry. ‘I’ve had my provisional license taken away (due to the medication I started out on), so my mum drives me and we use my blue badge. Nearly every time we go to the supermarket people will look questioningly at me because I look ‘fine’. The same happens when I use a disabled toilet with my radar key.’

Amelia was diagnosed in 2014, after almost a year of experiencing symptoms and she has developed Trigeminal Neuralgia (facial nerve pain) and Graves’ Disease (a thyroid disorder) as a result of treatment. She explains: ‘In March 2013 I started getting really severe headaches. My family thought I wasn’t drinking enough water and the GP was trying to rule out sinus trouble. In November 2013, I was sent for an MRI – we had to wait until the following January 2014 for the results. ‘The doctor said I needed to see him straight away as he’d found something on my brain. I was so nervous, I thought it was going to be a brain tumour. ‘When I saw the doctor he said ‘We’ve found lesions on your brain. I think you have something called MS’. ‘I didn’t know what that was.

He explained a little bit, what it means etc. and said I needed to see a neurologist. At the time I didn’t know what to ask as I was shocked.’ A week later, Amelia saw a neurologist and was told she needed to start treatment immediately. She explains: ‘He said: “I’d advise you nip home and get some things as I don’t know how long you’ll be in hospital for.”  

‘The neurologist said he wanted to give me an aggressive form of chemo as the MS had done a lot of damage – the only question I asked was ‘will I lose my hair?’ The answer was luckily no. ‘My mum wanted me to think about it, but I said yes straight away so I couldn’t change my mind.’

Chemotherapy is used in people with MS, as the immune system attacks the myelin sheath around the nerves of the central nervous system. Chemotherapy drugs are used to kill white blood cells, which are part of this attack. This may slow down or stop disease activity in MS.

The change in her lifestyle over the last few years has been something Amelia has found difficult. ‘I’m fed up of feeling like this, it’s so irritating. At 24 years old I want to be normal. I wish that I could go back to work. I miss it so much – the responsibility and getting up and doing something with my day,’ she adds.

When she does feel well, she tries to embrace life and pushes herself as much as she can. She says: ‘Good days are few and far between, but if I can get up and go for a short walk with my mum and sister around the park I see that as a win. ‘It’s incredible to have a couple of hours symptom-free. The problem is, when I feel like that I tend to jinx myself and then feel worse than ever after.

‘When I’m feeling OK, I don’t take being able to go out for granted. Having the energy to jump on the bus for a short journey and see a friend for a coffee is a bonus. ‘Living with MS means I’m continually having to pace myself and there’s no way of preparing yourself for the daily hurdles it throws at you; I’ve woken up with a burning pain in my eye which lasted for a week, to recently not being able to cross my fingers on my right hand for a few hours. ‘I do, however, like to set myself challenges.

In July 2018 I set up a Facebook group called MS UK for people with MS, people awaiting diagnosis and family members affected by the condition. ‘I love administering the group and there’s already more than 2.6k members signed up. ‘People have said they didn’t realise how badly MS has affected me and that it can be such a debilitating condition. ‘I wish people weren’t so ignorant.

If they were more open minded they would start to understand that some disabilities mean you have invisible symptoms.’  

We are asking shoppers, who are Blue Bade Holders, to think back over the last 12 months to consider their general parking experience and answer some questions about their experiences at supermarkets and on their other journeys where they have needed to access a parking space designated for Blue Badge Holders

Please contact us if you wish to help us with this survey.  Email info@spelthorneaccess.org.uk  or text 07853 038933 to register your interest or visit our website forum where the questions are listed. https://www.spelthorneaccess.org.uk/forum/scan-blue-badge-parking-bay-abuse-survey