Having MS is enough. It shouldn’t be made harder by a welfare system that doesn’t make sense.

Source MS Society: “Welfare support is vital for many people with MS. It helps us manage the extra costs of the condition, stay in work for longer and participate fully in society.”

“Yet our welfare system too often ignores invisible symptoms like pain and fatigue and fails to recognise how MS symptoms fluctuate.”

The assessment criteria for PIP fail to capture the true extent of the difficulties people face. And benefits assessors don’t always take evidence provided by professionals into account. Too often people with MS are under pressure to repeatedly prove they need support.”

Join the MS Society “Campaign to make welfare make sense” and watch their excellent film “Does Emma need benefits?” by clicking here.

Government to end unnecessary PIP reviews for people with most severe health conditions

Source Gov.UK: People with the most severe, life-long conditions will no longer have to attend regular reviews for Personal Independence Payment (PIP).

New guidance coming into effect this summer means people who are awarded the highest level of support under PIP – and where their needs are expected to stay the same or increase – will receive an ongoing award of PIP with a light touch review every 10 years.

The change will ensure that those with severe or progressive conditions receive an award which reflects the fact that their condition will not improve.

The Minister for Disabled People, Health and Work, Sarah Newton, said:

“We’re absolutely determined to ensure people get the right support that they need to live better, more comfortable lives.

PIP is a needs-based benefit that takes into consideration people’s individual, and sometimes quite complicated circumstances.

We’ve listened to feedback from organisations and the public, and this common-sense change will ensure that the right protections are in place while minimising any unnecessary stress or bureaucracy.”  Read on

New Aqua Instructor

Monica will be taking over from Caroline, teaching our twice-monthly Aquatic Exercise classes from 6th July. (Same time and place – First Friday and Third Thursday of the month at 2.00)
Monica already teaches the disability gym classes at the Park Club on Tuesday mornings.
Anyone new who might be interested in attending, please contact Jon at jonathan.thorne@sky.com

Valuing Goals Study

We are conducting a study to evaluate whether an online resource called ‘Valuing Goals’, which offers skills training in goal setting and action planning, can improve well-being for people with MS. I am contacting MSTCs to see if they would be willing to circulate an advert for the study to their membership for the opportunity to take part. Below are the main details of the study which I am completing as part of my Doctorate in Clinical Psychology at Royal Holloway, University of London. The study has been granted ethical approval by Royal Holloway Research Ethics Committee (REC Project ID: 717).

We have two versions of the Study Advert, one online and one paper, which I have attached. The online version can be circulated via a newsletter or email bulletin, and some centres have also put it on their Facebook group or website. It has a weblink for people to click to take them to the online Participant Information Sheet where they can get some further information.

Details of the Valuing Goals study:

Aim

To evaluate the effectiveness of a self-help well-being intervention (Valuing Goals programme) in increasing well-being within a sample of people living with multiple sclerosis (MS).

The Intervention – Valuing Goals

Valuing Goals is a 5-week online self-help programme designed by clinical psychologists to increase well-being by helping individuals identify and work towards positive life goals, that are in line with their personal values. The focus of Valuing Goals is on developing positive goals to improve well-being, rather than on reducing symptoms or distress through solving problems. It is based on knowledge from the psychological literature about the positive relationship between well-being and different aspects of values, goals and planning. It has been shown to increase well-being and quality of life in samples of people from the general population, people with depression, and people with long term mental health problems.

What would it involve for the Centre?

We will provide a poster or article to advertise the study and ask the centre to make it available to their members. The poster or article will include all the details of the study and my contact details so that anyone who might like the opportunity to take part can contact me directly.

What will it involve for the participants?

For those who would like the opportunity to take part, we will send them access to the Valuing Goals programme which they can work through online at home, which takes roughly one hour per week for five weeks. We can send a paper copy of the manual for those who would prefer it. Half the participants would be given access in July, and the second half would be given access in October (so that they can act as a ‘control group’). We will ask all the participants to complete some questionnaires that measure well-being and quality of life at three time points between July and October so that we can see if there have been any changes, and if the changes have lasted. These would take around 25 minutes and can also be done online at home, or we can send paper copies.

Timeline

We received ethical approval in March 2018. We will be recruiting participants for the study throughout June 2018 by sending out invitations and advertising via MS therapy Centres. We aim for participants to start the study in July 2018 and finish by November 2018. The data will then be analysed and written up as part of my Doctoral thesis by June 2019, and I will share a summary of the results to all supporting MS therapy centres shortly after.

If you would like any further information, or would like to discuss any of the above, please do not hesitate to contact me on the details below. Thank you again for your support.

Emma Britneff

Trainee Clinical Psychologist

Royal Holloway, University of London

Emma.Britneff.2016@rhul.ac.uk

07854471937

 

 

 

 

Valuing Goals_Study Advert_paper version

Amazon shopping

From June 15th to June 29th, Amazon will triple donations from 0.5% to 1.5% of the net purchase price of Qualifying purchases. Just go to our website: www.omstc.org and click on the Amazon link at the top of the page and just shop as normal, using your usual log-in details.  Please pass these details on to your friends and family.

GDPR – Consent

 

If you have not completed the ‘stay in touch’ form, please do so ASAP otherwise we will not be able to keep in contact with you via telephone, email or post.  If you cannot complete the form, please email Sue with your preferences asap.  Many thanks,

The Agony of Decision-making when It’s Time to Switch MS Medications

Source Multiple Sclerosis News Today: I’m agonizing over an important decision and it’s driving me crazy. I’m usually a quick decision-maker, but this one is tough. 

I’m agonizing over an important decision and it’s driving me crazy. I’m usually a quick decision-maker, but this one is tough. I have my analytical hat on, trying to look at my choices from a scientific standpoint. Unfortunately, my anxiety kicks in, and my hat is blown away. Let me explain.

My MS diagnosis was in 1986, a time before any FDA medication was available. When the first MS medication, Betaseron (interferon beta-1b), was approved, I was at the head of the line to sign up. It was exciting to finally have a treatment for my disease, especially one that promised to decrease the severity of an exacerbation while also delaying progression. Unfortunately, I experienced severe side effects, so I jumped ship after a few months.  Read on.

 

Molecule Whose Fragments Appear to Block Myelin Repair Identified in Study

Source Multiple News Today: A molecule responsible for preventing the repair of white matter in the brain, a process critical to treating multiple sclerosis (MS) and cerebral palsy, has been identified.

The research, “A TLR/AKT/FoxO3 immune-tolerance like pathway disrupts the repair capacity of oligodendrocyte progenitors,” was published in The Journal of Clinical Investigation.

White matter in the brain’s white matter is composed of nerve fibres. Its colour comes from myelin, the protective layer wrapping nerve fibres that work to ensure proper cell communication. Damaged myelin is a hallmark of MS and other disorders.

Myelin is produced by cells called oligodendrocytes. Research shows that, in cases of chronic white matter injury, oligodendrocyte progenitor cells (OPCs) — the precursor cells of oligodendrocytes — accumulate in lesion areas but are unable to produce myelin. Scientists believe this is due to the presence of fragments from a very large molecule called hyaluronic acid (HA); these small fragments also accumulate at lesion sites. Read on.

Cake Sale Reminder

Cakes needed for next Friday 11th please for the MEPC cake sale, you can bring in Wed/Thur/Fri a.m, and I will look after here.

Many thanks.