Gofalwyr a diwygio gofal cymdeithasol – Sylvia Penny cyfweliad

WAMES’ volunteer Sylvia Penny who cares for her adult daughter with ME, her adult son with asperger’s and her 90 year old mother, was one of the people interviewed on BBC Wales about the proposed changes to social care in Wales.

In the draft bill more people who look after disabled, sick and frail relatives could be entitled to help at home under proposals to change the law in Wales. Carers will have their needs assessed and could get a payment that puts them in control of their own care budget. But the Welsh government has said extra funding will not be required to deliver the Social Services and Wellbeing Bill.

WAMES joins other charities asking who will benefit, what support will be offered and when – 2016 is a long time away!

BBC news item: Helping hand for carers proposed in Wales

The Deputy Minister for Children and Social Services, Gwenda Thomas introduces the bill in a video on the Welsh Government website. (She speaks in Welsh first, then English)

Bydd y ddeddfwriaeth yn:

  • Cryfhau’r pwerau ar gyfer diogelu plant ac oedolion, fel bod modd amddiffyn pob aelod o’n cymdeithas sydd mewn perygl;
  • CaniatĂĄu i Weinidogion Cymru ystyried ehangu’r gwasanaethau sydd ar gael drwy daliadau uniongyrchol, sy’n golygu y bydd gan bobl fwy o reolaeth dros y gwasanaethau y maen nhw’n eu defnyddio;
  • Cyflwyno meini prawf cymhwysedd cenedlaethol a sicrhau bod pobl yn cael eu hasesu ar sail eu hanghenion, yn hytrach na dim ond ar sail pa wasanaethau sydd ar gael yn yr ardal;
  • Cyflwyno asesiadau cludadwy, sy’n golygu na fydd angen ailasesu anghenion pobl sy’n symud o un rhan o Gymru i’r llall, os nad yw’r anghenion hynny wedi newid;
  • Cyflwyno Fframwaith Canlyniadau Cenedlaethol er mwyn nodi’n gwbl glir yr hyn y gall plant ac oedolion ei ddisgwyl gan y gwasanaethau cymdeithasol, a mesur llwyddiannau i weld beth sydd angen ei wella; Contribute to this through the Ymgyrch Dw i’n Cyfri – Rydyn ni’n Cyfri
  • Cyflwyno hawliau cyfartal i ofalwyr fel bod pobl sy’n gofalu am berthynas neu gyfaill oedrannus neu anabl yn derbyn yr un hawliau â’r bobl y maen nhw’n gofalu amdanynt;
  • Sefydlu Gwasanaeth Mabwysiadu Cenedlaethol er mwyn gwella’r canlyniadau i blant sy’n derbyn gofal.

 

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Ymgyrch Dw i’n Cyfri – Rydyn ni’n Cyfri

Ymgyrch Dw i’n Cyfri – Rydyn ni’n Cyfri

I Matter We Matter logo

You can get involved if you:

  • live in Wales
  • are receiving social care support now or expect to in the future
  • are supporting others either as a paid worker or because of your relationships with friends or loved ones.

Getting involved is simple all you have to do is think about 2 questions:

  • What things are important to you in your life?
  • What helps you to do these things?

When to get involved?

  • before February 14th 2013

How to get involved:

  • complete the online form
  • download a paper form
  • request a form to be sent to you by WAMES    email     telephone 01970 636515

Why get involved?

The Welsh Assembly passed a draft law entitled the ‘Social Services and Well-being Bill Wales‘ on 28th January 2013. At the heart of this Bill is the proposal to create ‘a statement of national outcomes for social services and social care services’.

These National Outcomes will set out what support services should help people achieve in their lives. We have joined the ‘I Matter We Matter’ campaign so we can work with the Welsh Government to ensure that these ‘outcomes’ are built solidly on the views and opinions of the people of Wales.   Answers will be used anonymously as part of the campaign.

Find out more:

  • video of people from across Wales who explore what the ‘I Matter’ questions means to them
  • I matter website

Tell WAMES what matters to you and help us continue to campaign after the I matter campaign is over.   email     telephone 01970 636515

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Panorama: The great disability scam

Only half of all people with a disability are in work. BBC’s Panorama investigates if one of the government’s most ambitious welfare reforms, costing billions of pounds, can solve the problem of disability unemployment. Reporter Sam Poling reveals the private companies who are getting rich from the new reforms despite only being able to get a small fraction of disabled people back to work, and speaks to the charities and individuals who feel the most vulnerable in our society are being failed.

Watch The Great Disability Scam on iplayer – 30 minutes

TV producer Kate Ansell’s comments on the programme

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Dylanwadu ar hyfforddiant Iechyd a Gofal Cymdeithasol yn Abertawe!

Would you like to influence the next generation of health and social care professionals training in Swansea?

Coleg y Gwyddorau Dynol ac Iechyd invites service users and carers to be involved in their training programmes so that students hear about local people’s experiences and learn how to be the best health and social care staff.  This is a great opportunity to raise awareness of ME and other conditions!

You could be involved in:

  • interviewing students
  • planning programmes
  • teaching in the classroom
  • making a digital story
  • programme meetings

To find out more contact: Julia Terry     01792 513801     j.terry@swansea.ac.uk

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Asesiad cost-effeithiolrwydd y triniaethau treial FINE

Provisional results of the cost effectiveness assessment of the treatments used in the FINE trial (2010) have been published. The original trial found that:

For patients with CFS/ME in primary care, pragmatic rehabilitation delivered by trained nurse therapists improves fatigue in the short term compared with unconstrained GP treatment as usual, but the effect is small and not statistically significant at one year follow-up. Supportive listening delivered by trained nurse therapists is not an effective treatment for CFS/ME.

Abstract (provisional)

Background

Nurse led self-help treatments for people with chronic fatigue syndrome/myalgic encephalitis (CFS/ME) have been shown to be effective in reducing fatigue but their cost-effectiveness is unknown.

Methods

Cost-effectiveness analysis conducted alongside a single blind randomised controlled trial comparing pragmatic rehabilitation (PR) and supportive listening (SL) delivered by primary care nurses, and treatment as usual (TAU) delivered by the general practitioner (GP) in North West England. A within trial analysis was conducted comparing the costs and quality adjusted life years (QALYs) measured within the time frame of the trial. 296 patients aged 18 and over with CFS/ME diagnosed using the Oxford criteria were included in the cost-effectiveness analysis.

Results

Treatment as usual is less expensive and leads to better patient outcomes compared with Supportive Listening. Treatment as usual is also less expensive than Pragmatic Rehabilitation. PR was effective at reducing fatigue in the short term, but the impact of the intervention on QALYs was uncertain. However, based on the results of this trial, PR is unlikely to be cost-effective in this patient population.

Conclusions

This analysis does not support the introduction of SL. Any benefits generated by PR are unlikely to be of sufficient magnitude to warrant recommending PR for this patient group on cost-effectiveness grounds alone. However, dissatisfaction with current treatment options means simply continuing with ‘treatment as usual’ in primary care is unlikely to be acceptable to patients and practitioners.

Cost-effectiveness of supported self-management for CFS/ME patients in primary care

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Cysgu aflonyddwch yn CFS

Dr Michael Breus explores the research into the effects of CFS on sleep. Excerpt from his article:

Disrupted sleep is a hallmark of chronic fatigue syndrome. Chronic fatigue is associated with a range of sleep problems, including:

  • Excessive daytime sleepiness
  • Non-restorative sleep (waking feeling tired even after sufficient or prolonged periods of rest)
  • Difficulty falling asleep and staying asleep
  • Sleep disorders such as obstructive sleep apnea, insomnia, and narcolepsy

Despite the frequency with which people with chronic fatigue syndrome experience sleep disturbances, the connection between sleep and chronic fatigue—like so much else about the disorder—is not well understood.

Researchers at Australia’s Victoria University have conducted a review of research related to sleep and chronic fatigue. Their analysis sheds some light on possible reasons for poor sleep among patients with chronic fatigue.

  • Sleep complaints are common among chronic fatigue patients, but there is no single or typical sleep experience for people with this disorder. For the past two decades, research has shown high levels of sleep disorders among adults with this condition:
  • Several studies, including this one, have found that more than half of chronic fatigue patients have some type of sleep disorder
  • This study showed chronic fatigue patients experience greater levels of disrupted sleep than patients with multiple sclerosis
  • More than 50% of chronic fatigue patients in this study had obstructive sleep apnea or sleep-related movement disorders, such as restless leg syndrome
  • A similar study showed 46% of chronic fatigue patients suffering from obstructive sleep apnea
  • [Another] large, population-based study showed nearly 80% of chronic fatigue patients experienced un-refreshing sleep, and 20% had obstructive sleep apnea or narcolepsy

An important area of research into the connection between sleep and chronic fatigue looks at the role of pain. The physical pain associated with chronic fatigue may be a significant factor in the sleep problems experienced by people with chronic fatigue. We know that pain and sleep influence each other in multiple ways. Pain can make sleep difficult to achieve and sustain. Lack of sleep, in turn, can make us more sensitive to pain. Studies like this one have shown that pain causes chronic fatigue patients to wake more often throughout the night than either healthy people or those with depression. And this study found that disruption to slow wave sleep in healthy people triggered physical pain and fatigue similar to people with chronic fatigue syndrome. As researchers themselves note, the role of muscle pain in sleep disorders among chronic fatigue sufferers is an area of research that warrants more attention and further study.

There’s another body of research that suggests that people with chronic fatigue experience changes to their sleep cycles that could result in less restorative sleep. Studies have shown that people with chronic fatigue may spend less time in slow wave sleep than healthy people. Slow wave sleep occurs during the sleep stages 3 and 4, and is the most restorative sleep we can experience. Studies have shown that chronic fatigue patients spend a reduced amount of time in slow wave sleep and in REM sleep than healthy people. To date, there is less evidence for the reduction in REM sleep than in slow wave sleep. The cause of this disturbance to sleep cycles is unclear. However, there is evidence of a possible link between systematic inflammation and disruptions to sleep cycles, particularly to time spent in slow wave sleep. Systemic inflammation in the body is common among chronic fatigue patients, and may play a role in the persistent problem of non-refreshing sleep.

Still another area of study suggests that changes to the body’s nervous system activity may play a role in the sleep disruptions experienced by people with chronic fatigue. Chronic fatigue patients experience alterations to the functioning of their nervous systems during waking hours, and these can continue during sleep. Several studies have shown that chronic fatigue patients are more likely to experience disruptions to normal nervous system activity during sleep, and this may be affecting the quality of sleep they experience.

Chronic Fatigue Syndrome: How Does It Affect Sleep? Dr Michael J Breus

Sleep abnormalities in chronic fatigue syndrome/myalgic encephalomyelitis: a review   Dr Melinda L. Jackson, Dr Dorothy Bruck, School of Social Sciences and Psychology, Victoria University, Victoria, Australia

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WAMES a MWWMEG yn gyfuno adnoddau

Ar Ddydd Calan 2013, cyfunodd WAMES â Grŵp ME Canolbarth a Gorllewin Cymru (MWWMEG). Roedd gennym berthynas weithio dda â MWWMEG eisoes, ond rydym yn gyffrous ynglŷn â’r cyfle hwn i gyfuno adnoddau, i ddysgu oddi wrth MWWMEG ac i wella’n cefnogaeth a’n cynrychiolaeth ar ran pobl ag ME ledled Cymru. Felly, beth fydd y cam nesaf?

Cylchgrawn newydd i ymddangos ym mis Chwefror

Roedd llawer o aelodau MWWMEG yn gwerthfawrogi ei gylchgrawn llawn gwybodaeth, ac felly yn hytrach na’n cylchlythyr bychan anaml, rydym wedi penderfynu cael cylchgrawn a fydd, gobeithio, o ddiddordeb i bobl ledled Cymru. Bydd ar gael yn rhad ac am ddim ar-lein neu ar e-bost, neu gellir tanysgrifio ar gyfer copïau papur. Mwy o wybodaeth ym mis Chwefror.

Dewiswch sut i gyfrannu

  • ymaelodwch a helpwch i arwain gwaith WAMES
  • gwirfoddolwch a’n helpu i wneud gwahaniaeth i bobl ag ME
  • tanysgrifiwch neu ymunwch â’r rhestr e-bost rhad ac am ddim
  • cyfrannwch arian

NEU gwnewch y 4 peth!

Cefnogwch gyfarfodydd y grĹľp

Bydd cyfarfodydd lleol MWWMEG yn parhau fel grwpiau annibynnol, gyda chefnogaeth WAMES. Rydym bob amser yn awyddus i helpu pobl i sefydlu cyfarfodydd newydd. Cewch wybodaeth am bob grĹľp cefnogi yng Nghymru yma.

Beth arall?

Byddwn yn parhau, hyd eithaf ein gallu, i ymgyrchu a darparu gwybodaeth ar gyfer pobl ag ME, gofalwyr a phobl broffesiynol. Ond cofiwch mai sefydliad bychan ydyn ni, gyda chyllid cyfyngedig, felly meddyliwch sut y gallwch helpu os gwelwch yn dda!

 

Ar Ddydd Calan 2013, cyfunodd WAMES â Grŵp ME Canolbarth a Gorllewin Cymru (MWWMEG). Roedd gennym berthynas weithio dda â MWWMEG eisoes, ond rydym yn gyffrous ynglŷn â’r cyfle hwn i gyfuno adnoddau, i ddysgu oddi wrth MWWMEG ac i wella’n cefnogaeth a’n cynrychiolaeth ar ran pobl ag ME ledled Cymru. Felly, beth fydd y cam nesaf?

Cylchgrawn newydd i ymddangos ym mis Chwefror

Roedd llawer o aelodau MWWMEG yn gwerthfawrogi ei gylchgrawn llawn gwybodaeth, ac felly yn hytrach na’n cylchlythyr bychan anaml, rydym wedi penderfynu cael cylchgrawn a fydd, gobeithio, o ddiddordeb i bobl ledled Cymru. Bydd ar gael yn rhad ac am ddim ar-lein neu ar e-bost, neu gellir tanysgrifio ar gyfer copïau papur. Mwy o wybodaeth ym mis Chwefror. 

Dewiswch sut i gyfrannu

  • ymaelodwch a helpwch i arwain gwaith WAMES
  • gwirfoddolwch a’n helpu i wneud gwahaniaeth i bobl ag ME
  • tanysgrifiwch neu ymunwch â’r rhestr e-bost rhad ac am ddim
  • cyfrannwch arian

NEU gwnewch y 4 peth!

Cefnogwch gyfarfodydd y grĹľp

Bydd cyfarfodydd lleol MWWMEG yn parhau fel grwpiau annibynnol, gyda chefnogaeth WAMES. Rydym bob amser yn awyddus i helpu pobl i sefydlu cyfarfodydd newydd. Cewch wybodaeth am bob grĹľp cefnogi yng Nghymru yma.

Beth arall?

Byddwn yn parhau, hyd eithaf ein gallu, i ymgyrchu a darparu gwybodaeth ar gyfer pobl ag ME, gofalwyr a phobl broffesiynol. Ond cofiwch mai sefydliad bychan ydyn ni, gyda chyllid cyfyngedig, felly meddyliwch sut y gallwch helpu os gwelwch yn dda!

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Paratoi ar gyfer gwaith neu golli eich budd-daliadau

The Telegraph reports on UK government plans to be introduced from 2013 where anyone claiming Employment and Support Allowance (ESA) because they are ill will face sanctions if they do not take steps to prepare for work.

They will be expected to maintain regular contact with Jobcentres and to look for employment opportunities while awaiting the assessment of their fitness for work.

Telegraph article: Prepare for work or lose your benefits, long-term sick are told

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Dr Shepherd: damcaniaethau o ME

Dr Charles Shepherd speaks to the Telegraph about his own experience of ME and the major theories of the condition:

The origin of such symptoms remains a mystery. One theory gaining favour is that ME patients have an aberrant immune response which fails to “switch off” after the original infection has resolved itself. In particular, it is possible that some ME patients have a surfeit of cytokines – chemicals produced by the immune system.

Another theory is that an auto-immune response (in which the immune system produces antibodies that attack the body’s own cells) may be involved. Other research is looking at potential abnormalities in the muscles of ME patients, with evidence that some sufferers produce excess acid when they exercise (Shepherd himself took part in research on muscle tissue – and still has a scar on his leg to prove it).

One study at Liverpool University is examining potential structural abnormalities in the mitochondria – cell components which produce energy in a usable form – in skeletal muscle.

A further focus of research are abnormalities in the hypothalamus. This tiny pea-shaped gland in the brain regulates a number of functions including hormone secretion (via the pituitary and adrenal glands). Problems here could help explain symptoms as diverse as sleep disorder, low blood pressure, temperature disturbance and heart, bowel and bladder problems. “A large number of papers demonstrate that ME patients have abnormalities in the hypothalamic-pituitary-adrenal axis,” says Shepherd.

In particular, he says, ME patients have been found to have lower levels of cortisol, a hormone secreted by the adrenal glands. He concedes that ME researchers are still “fitting together the jigsaw puzzle”, with some way to go before treatments are developed. “We have reached a point where there are drugs that would be worth trialling,” he says. But clinical trials are expensive to run and the pharmaceutical industry, the only realistic source of such funding, has shown little interest.

In the meantime, can graded exercise (a programme aimed at building up activity levels) and cognitive behavioural therapy, advocated by Nice, help with the symptoms? “The Nice guidelines on ME are not fit for purpose,” Shepherd argues. “They reflect the belief that this is a psycho-social illness.” He himself is a fan of pacing – a technique which involves listening to your body to find the right balance between rest and activity. “I go swimming and walking, but within the limits of what I can do.”

He also feels progress has been stymied by rebranding ME as chronic fatigue syndrome. “Doctors never liked the term ME because it refers to inflammation of the brain and spinal cord, which has never been found,” he says. “But calling it CFS has made research trickier because CFS is an umbrella term for different pathologies – it’s a bit like grouping together all the different kinds of arthritis and saying they have the same cause.” He prefers the term myalgic encephalopathy, which reflects a significant neural abnormality in the brain.

He is encouraged, though, by progress at the Medical Research Council, where an expert group to encourage high-quality research into ME was set up in 2008, and where, last year, £1.5 million was ring-fenced for this purpose. So far funding has been approved for five studies – among them mitochondrial function and cytokine production in muscle tissue, immune system involvement and autonomic dysfunction.

Read the full article: ME isn’t ‘all in the mind’, but it’s still a mystery

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Deiseb i ddiddymu’r Deddf Diwygio trefn y budd-daliadau 2012

Repeal the Welfare Reform Act 2012

Responsible department: Department for Work and Pensions

We want Parliament to repeal the Welfare Reform Act of 2012.

The Act vindictively targets all benefit claimants disproportionately causing millions of people financial hardship, poverty and at risk of starvation and homelessness.

The Bedroom Tax, the abolition of Disability Living Allowance, changes to Social Fund, ending of Council Tax Benefit, draconian sanctions on those deemed to have not actively sought work and more are all measures that have and will cause severe hardship.

The Act, in particularly targets sick and disabled people causing them immense hardship and unnecessary suffering.

E-petition page

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