Monday, 30 January 2017

Did you know people with MS have a greater risk of developing thinning of the bones (osteoporosis)

Source MS Trust:

People with MS have a greater risk of developing thinning of the bones (osteoporosis). As there are often no symptoms, it may only be discovered when you break a bone in a minor accident. MS nurses Pauline Shaw and Debbie Quinn put together these tips for keeping your skeleton healthy and strong.  Read on.

Hollyoaks’ Nancy Osborne faces her MS diagnosis

Source MS Society:

This week Channel 4 soap opera Hollyoaks will be broadcasting a new storyline where a main character, Nancy Osborne, finds out she has MS.  Read on.

Fresh evidence that DWP bars email communication from disabled claimants

Source Disability News Service:

Fresh evidence has emerged that the Department for Work and Pensions (DWP) has refused to allow benefit claimants to communicate via email, despite its claims that it allows disabled people with “valid reasons” to do so.

Last week, one disabled PIP claimant, Mark Lucas, told how he was taking legal action against DWP for refusing to allow him to communicate with its civil servants via email as a reasonable adjustment under the Equality Act.  Read on.

New signs on disabled toilets in Tesco stores to recognise ‘invisible’ illnesses

Tesco changing the disabled toilet signs in over 700 stores is a fantastic way to raise awareness. It will help people understand that you can’t always see someone’s disability, whatever it may be. For many people like me this is a little help that will make a big difference.  Read on.

Would you like to participate in a study looking at dark cocoa on fatigue in MS?

Friday, 27 January 2017

Campaigners welcome RBH apology and wide support for hydrotherapy but warn against any gaps in provision

Representatives from groups campaigning to save the Royal Berkshire Hospital hydrotherapy pool from closure including; Arthritis Matters, REACH, MS Society, Berks DPAC, Berkshire MS Therapy Centre, Peapods, Reading Fibromyalgia Support Group, Parkinson’s Society and Reading Families Forum, were out in force last night (Jan 25th) to lobby hospital governors and management. They had submitted a series of public questions seeking a public apology for statements made denigrating the effectiveness of the only treatment that brings pain relief and mobility to many with disabilities and chronic pain conditions. They also pressed for a formal acknowledgement of the 'proven clinical benefits' of hydrotherapy. 

On behalf of the RBH management, who have already agreed to defer the planned pool closure until June, hospital chair Graham Sims apologised for the way the issue had been handled and for any offence caused to patients and their families. New Chief Executive Steve McManus put on record the value of hydrotherapy and confirmed his intention to work with the campaigners on looking at how the service can best be provided in the Reading area. However, neither he  Mr Sims were able to confirm that there would be no gaps in provision to patients after June. This prompted former Reading West MP and MS Therapy Centre patron Martin Salter to write to Mr Sims demanding assurances.

In his letter Mr Salter described the statements by the RBH management as "an excellent basis upon which to move forward" but warned any gap in the hydrotherapy service would be 'a deal breaker' in any future cooperation.

He wrote:  

However, there remains considerable unhappiness at the failure to give us a categorical assurance last night that there will be no gaps in provision. With the best will in the world there is no way any alternative hydrotherapy service is likely to be up and running by the end of June which means that the current pool must be kept operational to provide treatment and pain relief to those who need it. This is a deal breaker - make no mistake about that - but it is easily resolvable by either you or Steve issuing that assurance. 

I hope you will be able to do this swiftly so that we can all move on and consolidate the excellent progress that was made last night. 

This was echoed by Reading West MP Alok Sharma who added:

 "I am looking forward to the consultation process by the hospital as it seeks detailed views about the hydrotherapy pool and the campaigners Stakeholder Engagement Group will look to work closely with CEO Steve McManus and his team. However it is imperative that, whatever solution is agreed for continuing to deliver a hydrotherapy service, there must be no time gap in provision. This is a vital service which many patients depend on and I would welcome a formal commitment from the hospital that a gap in provision will be avoided." 

The campaign received a further boost this week when Reading Borough Councillors unanimously approved a strongly worded motion opposing the planned closure.

Chair of the Council's Health & Wellbeing Board, Councillor Graeme Hoskin said:

" I was pleased to take a motion to Full Council meeting this Tuesday where Reading Borough Council unanimously expressed its opposition to the closure of the hydrotherapy pool and our belief that the resulting impact on the health of users of the pool will far outweigh any short-term financial savings to the hospital We also welcome the extension of proposed closure to the end of June. This will allow the Trust time to engage with stakeholders, current users of the pool and partners, including the local authority and the NHS Clinical Commissioning Groups."

Tuesday, 24 January 2017

Citizens Advice are hosting a workshop on reducing the cost of energy bills and saving energy in the home

As part of this year’s Warm Homes Campaign, Citizens Advice Reading are hosting a free workshop giving practical advice on reducing the cost of energy bills and saving energy in the home.
The event is open to anyone working with people struggling to heat their homes as well as to carers and anyone with an interest in reducing their own energy bills.
The event will be made up of a number of practical and interactive sessions covering topics such as
  • Energy efficiency – hints and tips on draught proofing, dealing with damp and condensation and other energy saving ideas
  • Finding the best deal – demonstrations and opportunities to use the internet to find the best price for gas and electricity
  • Help and support available for consumers, with a local focus
The event will be held on
Friday 10th February 2017
10am - 2pm
Council Chamber, Reading Borough Council, Civic Offices, Bridge Street

Lunch and refreshments will be provided free of charge.
Booking is essential – to confirm your place, please email

Sessions will be run by Citizens Advice Reading, Draught busters and Winter Watch.
Please feel free to forward this on to your colleagues and networks.
Hope to see you on the 10th.

Wednesday, 18 January 2017

Press Statement from the Save the RBH Hydrotherapy Pool Campaign

Announcement of Hydrotherapy Pool Closure Postponement

Campaigners from Save the RBH Hydrotherapy Pool Campaign gave a guarded welcome to the announcement from the new hospital Chief Executive Steve McManus that plans to close the pool had been put on hold until June to give time to address "questions raised by MPs and local patient representative groups" and to "engage with existing users of the facility."

The campaign is supported by Arthritis Matters, REACH, MS Society, Berks DPAC, Berkshire MS Therapy Centre, Peapods, Reading Fibromyalgia Support Group, Parkinson’s Society and Reading Families Forum.

The former Reading West MP Martin Salter, who is patron of the MS Therapy Centre said:

'Obviously we want to thank Steve McManus for listening to us and seeking to put right the wrongs of his predecessor. It is clearly no coincidence that they announce the postponement on the day we produce a dossier taking apart their flimsy case for closing a much needed medical facility.
They say they want to fully address the questions that have been raised by ourselves and the MPs and to properly engage with users and their representatives but for this to happen in any meaningful way there are things we will need to get straight first at our meeting with the hospital management of Friday.

        1) There really should be a public apology to users of the pool and others suffering chronic pain conditions for describing hydrotherapy as a 'feel good service'. This was deeply insulting and has caused anger and mistrust which is no basis for future joint working.

        2) They must accept that hydrotherapy does have 'proven clinical benefits' as set out in our dossier and evidenced in their own statements.

        3) We should all avoid prolonging the situation unnecessarily and causing uncertainty and distress to users who rely on the service. The matter should be resolved as quickly as possible.

         4) The charities and patient groups are entering these consultations on the basis that it is about HOW we deliver an NHS hydrotherapy service in Reading not IF we have one.

We expect the pool to remain fully open throughout this process and for the RBH to improve their management of the facility. That said, we are looking forward to a constructive meeting with Mr McManus and are grateful to Alok Sharma MP for organising the delegation. "

Kim Seabrook, Chair of Arthritis Matters Reading added:

"As we have made clear throughout our campaign, which has seen over 3000 register their disgust at the proposed closure, hydrotherapy is a beneficial treatment that works across generations and across diseases.  It enables people to regain their mobility and independence, and manage chronic conditions such as Arthritis, Parkinson’s and Multiple Sclerosis with fewer visits to GPs and hospitals. We will keep on fighting to keep this valuable facility permanently open for everyone in the local community. We are not interested in any temporary postponement. "

1) PRESS STATEMENT from RBH 17.1.17

The Board of the Royal Berkshire NHS Foundation Trust  has agreed to defer the closure of its hydrotherapy pool until 30 June 2017.  During this period the pool will continue to be fully operational;  the Trust will clarify its Clinical and Estates strategies in the relation to the hydrotherapy service and work with local partners to address questions raised by MPs and local patient representative groups. The Trust will also engage with existing users of the facility.    At the same time it will work with local Clinical Commissioning Groups, other NHS partners and the local authority to explore future commissioning intentions for the hydrotherapy service.

2) The dossier ‘Why the RBH should keep the hydrotherapy pool open – the case against closure’  can be found here:

Monday, 16 January 2017

For Sale - Carony 12 Car Seat

Read the excellent case against the closure or the hydrotherapy pool at Royal Berkshire Hospital

Our Patron, Martin Salter is among the campaign group set up to protest against the planned closure of the hydrotherapy pool at Royal Berkshire Hospital.

Read their excellent case against the closure here.

Introducing Tricia - our new Massage Therapist joining us in April

Hi everyone – My name is Tricia Carter and I will soon be joining the team at the MS Therapy Centre, so I’d like to take this opportunity to briefly introduce myself.

Prior to studying and completing my training in Anatomy, Physiology & Holistic Massage, I worked in Corporate Business for over 16 years.  However, massage was always my passion and after qualifying, I set up Health in Harmony in 2005.  I am an ITEC licensed therapist, fully insured and a professional member of the Complementary Therapists Association.

I believe massage therapy plays an important part in our health and wellness. In the stressful world we live in today, I believe massage should be regarded as part of an optimal health regimen.  As a Massage Therapist and an Aromatherapist I can offer a variety of treatments tailored to your needs.  Please visit my website for details of the treatments I offer:

At the start of our first session, we will have a 10-15 minute consultation where we can get to know each other.  I can find out about your health, the elements I should be aware of, and your preferred areas of focus.  I can then use this information to plan your treatment which will be carried out using various techniques and essential oils as required.  I’m really looking forward to meeting you all soon. Cost £15.00 per session paid directly to Tricia.

Thursday, 12 January 2017

Hydrotherapy Pool Campaign Update

We are very pleased with the support that local politicians of all parties have given to the hydrotherapy pool campaign. It's been much appreciated by the campaign group and we are particularly pleased with the excellent letter from my successor, Alok Sharma MP to the new hospital chief executive Steve McManus.

Reading East MP Rob Wilson is also onside and has posted statements on his website and Facebook page including this recent update:

"Essentially, I think that the Trust has handled this situation poorly. It should now seek to engage immediately with campaigners and service-users and back away from its current position by undertaking a re-evaluation of the closure plan. With a new Chief Executive, this is the perfect opportunity to reassess."

Alok is organising a delegation to meet the RBH management from the various charities and patient groups that currently use the pool. This is taking place on Friday 20th January and I will be attending to represent the MS Therapy Centre and to give some background to the issue. 

As well as our two Conservative MPs Reading's Labour Councillors have been strong supporters with a number turning up for our recent petitioning session in Broad St. They are preparing to pass a resolution at the Council meeting later this month condemning the closure. 

I've also been invited to ask a public question at the next meeting of the Reading borough Council's Health and Well Being panel on Fri 27th which will be another opportunity to highlight the issue. 

We are petitioning again in Broad St Mall on Friday 13th Janaury  from 11am to 1pm and next week we will be publishing a comprehensive dossier dismantling the hospital's case for closure. This will be sent to all hospital governors ahead of their Council of Governors meeting on January 25th where we are hoping to begin the process of getting the closure plans overturned.

If you would like to write to the governors expressing your opposition to the planned closure of the hydrotherapy pool you can find their details here:

To make things a little easier I've drafted some text that can be used in any emails to the RBH governors but obviously it's good if people use their own words as well.

" Do you recognise the extent of public anger and concern at the decision to close the hydrotherapy pool at the Royal Berkshire Hospital which provides treatment, rehab and relief for disabled people, those recovering from stokes or neuro surgery, sufferers of chronic pain conditions including arthritis, fibromyalgia, muscular dystrophy, Parkinson's, ankylosing spondylitis as well degenerative diseases such as MS? Since this decision was taken without any consultation with patients groups, the local community or even the Hospital's Council of Governors and the announcement has been marked by misinformation and contradictory statements from the Hospital Trust can I urge you to vote for the suspension of the closure process and the opening up of a meaningful dialogue with clinicians and patients on finding a way forward."

All in all the campaign is going well but please keep sending those emails, writing to the local papers, getting signatures on the petition and spreading the word amongst your friends and colleagues. 

Many thanks

Martin Salter
Berkshire MS Therapy Centre

NEW! Footcare now available every other Wednesday, Thursday and Friday

Ruth Best is extending her Footcare service to include Wednesdays from the 8th February 2017.

Appointments are available every other Wednesday, Thursday and Friday and can be booked at reception or by calling 0118 901 6000.

Healthy feet play a huge role in how you feel but sometimes having MS can make it difficult caring for them in a way you would like.  Ruth will leave you with your feet feeling wonderful and offer advice on taking care of them.

This services is free for our MS Members but we warmly welcome donations.

Researchers Identify 2 Cytokines Responsible for Chronic Flares in Autoimmune Diseases

Researchers have identified two factors that allow Th17 cells — which drive multiple sclerosis (MS) and other autoimmune conditions — to form memory cells in the body and cause repeated symptom flare-ups.  Read on.

MS Patient’s Pick of the Week’s News: Diet and Exercise, Tolerability, CHANGE-MS and More

Multiple Sclerosis News Today, pick of the week's news: Diet and Exercise, Tolerability, CHANGE-MS and more.  Read on.

Fusion Protein, CGEN-15001, Shows Ability to Restore Immune Balance in Mice with MS

Compugen has reported new and promising results from studies on animal models of multiple sclerosis (MS) that support its lead drug candidate, CGEN-15001, as a potential treatment for a variety of autoimmune diseases, including MS.  Read on.

Reading School of Pharmacy are looking for people with MS who have experience of falls.

The Reading School of Pharmacy is running a short workshop on people with experience of falls for our 4th year pharmacy students. We're looking for participants with Multiple Sclerosis who would be happy to share their experience of falls with our students. The workshop will be held from 10.00 until 11.00 on the 16th of February at our Whiteknights campus - please contact Patrick Lewis if you are interested in taking part or would like more information.

Unwanted Christmas Gifts?

A huge thank you to everyone who has donated some of their Christmas gifts this week. If you received things that you will not use please donate them to the Centre. Rather than allowing them to get covered in dust we will find them a loving home and support the local MS community.

Berks Wheelchair Rugby Taster Sessions Dates Announced

The Berkshire Banshees - a brand new wheelchair rugby club based in Berkshire is set to hold a number of 'taster sessions' aimed at recruiting new members to the club and sport. The sessions are open to all physically disabled potential players - male or female - aged 16 or older.  Read on.