For the first time the Alliance has made this event easily accessible for the general public – you can watch a live video stream of the ‘ASK THE EXPERTS’ session from the comfort of your armchair, on the train, at work etc… The professionals who have spoken today and yesterday will be answering questions and giving greater detail about the subjects they have presented.
To view the ’ASK THE EXPERTS’ session live from 1.30pm click here…
A full copy of the Alliance programme can viewed via their website as a pdf…]]>
£22,297 – £27,252 per annum
Based in Glasgow
This is a busy and challenging role – our income will be around £1.2m this year, and community and events fundraising accounts for around 40% of that. You’ll be working with the Head of Fundraising and Volunteering, but will have the autonomy to develop and implement your own ideas.
We are a small fundraising and volunteer development team of 5 people: working closely, sharing ideas, and supporting each other to achieve our aim of raising funds to improve the lives of people with MND.
If this sounds like your kind of job, and you’d be interested in working with us, then please click here to find out more…
Please send all applications by email to recruitment [at] mndscotland [dot] org [dot] uk or by post to MND Scotland, 76 Firhill Road, Glasgow G20 7BA.
Carers look after family, partners or friends in need of help because they are disabled, frail or have an illness like motor neurone disease. Carers often don’t realise there is support available to them.
MND Scotland feels it’s important that there is an increase in the uptake of benefits – it’s estimated that millions of pounds entitled to carers’ via benefits aren’t claimed each year. Every year, more than 2 million people become carers but many don’t identify themselves as carers and miss out on support. Even those who have been caring for years sometimes aren’t aware of their entitlements. Carers often do not realise practical support is available, like replacement care to give the carer time off, help with lifting and bathing, equipment and home adaptations that can be vital in protecting carers’ health.
MND Scotland services for carers
MND Scotland has many resources that are helpful for carers. These include a team of specialist nurses, specialist equipment, counselling, information, benefits and welfare advice, befriending, family information evenings, and local support groups. Find out more about these and others on the Our Services section of our website…
We also have a page on the website with links to helpful carers organisations…]]>
MND Scotland responded to the Scottish Parliament Welfare Reform Committee’s ‘Your Say’ consultation during the summer. The Committee’s Convener, Michael McMahon MSP now wants to hear from you, as outlined in his letter below:
Over the last year we have heard the stories of people from Glasgow, Annan, Kirkcaldy, Dunoon, Stirling, Coatbridge, Hamilton, Dundee, Edinburgh, Biggar… the list goes on.
Some of these personal stories are extraordinary, moving, shocking and often painful. Some of you may remember the evidence our blind witness, Henry Sherlock, who was asked to raise an empty cardboard box in his Work Capability Assessment, but not take it anywhere. He couldn’t, he would need to be holding his white stick in one hand.
More recently we heard from Scott Wilson, who suffers from Parkinson’s and is separated from his partner, requiring an ‘extra’ room to look after his disabled son for part of the week. He is being charged the ‘bedroom tax’ and is threatened with having to move.
I bow my head to the courage of these men and women who have come before us and shared the sometimes intimate details of their lives with the hope that this will help to make things better for others. I also firmly believe that this process of exposing the impacts of welfare reform on people’s lives every-day is slowly having an effect on the way people feel about this process.
I am happy to say that my Committee – most of them – share this view and we will be continuing with the Your Say initiative. We would like to run an evidence session – late this year, or early next – looking at the impact of welfare reform on those with long-term conditions, generally health conditions that last a year or longer, impact on a person’s life, and may require ongoing care and support. Many of those who have given evidence to us have had long-term conditions, but we would like to focus a session on this issue.
We have an additional reason for wanting to do this. Many people are saying to us that one of the emerging issues with welfare reform is the cumulative impact of the different measures. That people who are losing income through Work Capability Assessments are also being hit by the ‘bedroom tax’, and may well struggle with PIP assessments etc. etc.
This was an issue that was flagged up to us by Professor Steve Fothergill of Sheffield-Hallam University in the research we commissioned from him on the impact of welfare reform on Scotland and we would like to examine how this is turning out in practice.
So we would like to hear from those with, or caring for those with, long-term conditions about how welfare reform – any aspect of it – is impacting on them. The day-to-day reality of life as well as hopes and fears. And we would particularly like to hear from those who have been affected, or think they will be, by several aspects of it. However, even if you have only been affected by one measure, we would still like to hear from you.
Our Committee is here to help you find your voice in the Scottish Parliament. Send us your experiences and we will do the rest.
Michael McMahon MSP, Welfare Reform Committee Convener]]>
To carry out branch administration and act as a main point of contact for all branch communications including acting as a spokesperson for the branch. In addition the secretary will be responsible for attending and chairing meetings.
Bi monthly Tuesday evening meetings lasting approximately 1.5 hours and approximately 4 hours a month dealing with branch communications, other branch business and spokesman duties.
Meetings take place in the east end of Edinburgh within the community rooms of Moira Park sheltered housing complex, 54 Moira Park, Edinburgh EH7 6RU]]>
There’ll be an auction and raffle as well as dinner, drinks and dancing, to the fabulous Big Verne & The Shootahs and DJ Barry Shafar. Tickets are £60 each or £600 for a table of 10. We hope to see you there!
More information and online booking available here: http://www.mndscotland.org.uk/event/the-cornflower-ball/]]>
There is assistance that you may be entitled to depending on your own personal circumstances. These can include help towards electric bills, insulation, boiler/heating replacement, low cost energy tariffs and general advice on energy efficiency measures for your home.
The Scottish Government have established the Home Energy Efficiency Programme to provide support to those who are having difficulty paying their energy bills or keeping sufficiently warm. The Energy Savings Trust manages the national scheme which in Scotland is delivered through Home Energy Scotland.
There is further help available through the Department for Work and Pensions (DWP) however you must be receiving a relevant qualifying benefit in order to be eligible for the help: ‘Cold Weather Payment’ (paid if you are on a qualifying benefit, such as Pension Credit or benefits like Income Support, and the local temperature is recorded as an average or below 0 degrees over 7 consecutive days). ‘Warm Discount Scheme’ (you may qualify for £135 discount from your electricity bill if on the ‘qualifying day’ (20 July 2013) your energy supplier was part of the scheme, your name (or your partner’s) was on the bill and you were either:
If you require any further information about eligibility or assistance in applying with the above schemes provided by the DWP please contact our Benefits and Welfare Service at MND Scotland on 0141 945 1077. We can also help with benefit checks and any other benefit queries.]]>
The purpose of the grants is to support carers and people with MND by giving them the chance to enjoy quality time outside their usual routine. We particularly want to give carers time to unwind and recharge, to help them to cope with their caring role. You can use the grant to spend time together or for one person to have a break, as long as you will both feel the benefit.
You can read more about the grants, and apply online, here: http://www.mndscotland.org.uk/services/small-grants/time-to-live-grants/]]>
MND Scotland is saddened by the news of former Rangers player Fernando Ricksen’s diagnosis of Motor Neurone Disease, and offers our full support in his fight against this devastating illness.
Motor Neurone Disease (MND) is a rapidly progressing, terminal neurological illness. 130 people in Scotland are diagnosed with MND each year, and there are currently 381 living with the illness. From diagnosis, average life expectancy with MND is 14 months.
MND Scotland ensures that everyone living with Motor Neurone Disease, their families, and carers receive the best quality of care and support, while also funding research into the disease.]]>
One of the issues facing people affected by MND is the general lack of experience of the condition by many health and social care professionals who could be involved in their care. For example, it is estimated that on average a typical GP might see no more than one case of MND in a whole lifetime of general practice.
Recently it was recognised by a healthcare worker from Benbecula that, whereas in the past they might have the occasional person in the Uists affected by MND, nowadays they were rarely without a patient with the condition. This caused her to make contact with our Education Officer to see if there was anything MND Scotland could do for them education wise. After some consideration and consultation with Carole Ferguson, the care team specialist who covers the Western Isles, it was agreed that Carole and Bob, between them, would try to provide a complete study day for the GPs and Allied Health professionals who work in the Uists.
The agreed date was set for the 13th of August and a programme was drawn up to cover the essential points that Bob and Carole would want people to know about MND, and the most common form of the illness in particular, Amyotrophic Lateral Sclerosis (ALS).
Due to the timing of flights from Glasgow to Benbecula it was not possible to begin the study day before noon, which suited everyone attending as they could then squeeze in essential clinics or visits in the morning before meeting at the Dark Island Hotel for the event.
Carole and Bob were delighted by the turnout, which included four of the islands’ GPs as well as a range of other specialists such as OTs, physiotherapists and nurses. Carole started the day by talking about how the different conditions that are classified as MND are defined, how they progress and the common secondary complications associated with them.
After a brief break for lunch, Bob then provided an update to the classical view of MND by discussing the implications of the MND genes that have been discovered since 2006 and whether or not it is still appropriate to think of ALS as a single disease. Carole followed this by looking at the patients’ journey, models of care and a case study.
One area that is not generally well known by non-specialists is that of cognitive change in some MND patients, so the fourth session was devoted to looking at psychological issues associated with receiving a diagnosis of MND and cognitive changes related to the condition.
Following a break for coffee, Carole again took over the podium, this time to describe the services MND Scotland offers and how they can be accessed on behalf of patients. In the last session of the day Bob reviewed equipment and gadgets that can make life easier for people with MND ranging from support collars, to profiling beds, including demonstrations of some i-Pad apps that convert text to speech and a very quick demonstration of a computer controlled by Eye-Gaze. This last session was wrapped up about 6:30 pm.
Subsequent feedback indicated that the day was well received and very greatly appreciated by all who attended, making us think that this model could work well for future study days for more rural communities.
If you are a health or social care professional who feels that greater education and knowledge of MND is needed amongst your colleagues then please get in touch with us at info [at] mndscotland [dot] org [dot] uk We hold a range of education days in the workplace as well as study days.]]>