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Archive for the ‘Uncategorized’ Category

People with autism face challenges accessing support

Posted on: September 5th, 2013 by admin No Comments

One in a hundred people in the UK has autism and while some are able to live relatively independent lives, others may need a lifetime of specialist support.

NICE (the National Institute for Health and Care Excellence) conducted a study and concluded that for health professionals to appreciate the varying challenges that autism can present among different age ranges, a higher level of training is needed

Consultant paediatrician at Guy’s and St Thomas’ NHS Foundation Trust, Professor Gillian Baird, explains: “Many people who have autism will have other physical, neurodevelopmental or mental health conditions such as intellectual disability, attention deficit hyperactivity disorder, anxiety and sleep problems which are not always recognised.

“Assessment needs to be tailored to the individual and their families or carers, to enable them to get the right intervention and support from education, health services and voluntary organisations.”

Adults with autism are some of the most excluded and least visible people in the UK.  There are no physical signs and it can be a very isolating condition.  Autism is often described as ‘the hidden disability’.

How better to help people understand that there is support for them and that they can access and benefit from it, than showing them the impact that good services can have?

NAS (the National Autistic Society) is, for many families, one of the first places that they contact when looking for help, advice and support. NAS assembled an informal commission of members of the House of Lords earlier this year to look at the challenges facing older people with autism.  They produced a report, ‘Getting on? Growing older with autism’, calling for the following:

Healthcare professionals working in age-related specialisms to be trained in autism

• Local NHS bodies to make counselling available to people with autism after they have been diagnosed, where this is not already available

• Older people to not be disadvantaged in diagnosis by the need to provide evidence of their developmental history, if this is not available

• The Department of Health to fund research on overcoming the challenges posed by diagnosing older adults with autism

Baroness Greengross said: “I have worked in older people’s policy for over thirty years. But during this time I’ve heard little about older adults with autism. In part, this is because the first generation of adults diagnosed with autism is only now moving into older age. But it is also because this group has simply been overlooked.”

NAS is also focused on reaching out to ethnic minorities.  Tom Madders, head of campaigns at NAS, says: “We frequently hear from individuals and families who say that cultural and language barriers prevent them from accessing the support they desperately need.”

The campaign was launched with the help of MP Diane Abbott, who commented: “This campaign highlights an incredibly important issue. Many of my constituents from ethnic minority communities struggle to receive the Special Educational Needs support they need for their children, and these difficult experiences are replicated across the UK. It’s vital that we do more to understand autism and its impact on black and ethnic minority communities – we hope this campaign is a first step towards a greater understanding and better support.”

Standard of healthcare available to people with learning disabilities criticised by Health Minister

Posted on: August 12th, 2013 by admin

After the Department of Health publication of the ‘Six Lives Progress Report on Healthcare for People with Learning Disabilities’ and the ‘Confidential Inquiry into premature deaths of people with learning disabilities’, which both show the standard of care and inequality faced by people with learning disabilities is still of a poor standard, Care and Support Minister Norman Lamb says more needs to be done.

Mr Lamb said, whilst launching the Government’s official response: “It is not good enough that people with learning disabilities are at a greater risk of dying earlier due to poor healthcare … Good, high quality care should be expected for everyone. We wouldn’t accept this kind of poor care for cancer patients so there is no reason why it is acceptable for people with learning disabilities … We are making progress on improving standards of care but we have to go further and keep driving forward our plans.”

The way that people with learning disabilities are identified will be improved so as to better meet their needs and the Department of Health has outlined progress on improving healthcare – giving people with learning disabilities a greater voice.  Work within NHS England to monitor and improve their treatment is a priority.

Not everyone is happy with what the Government are doing, and feel that they could do more in the light of the findings published in the two documents.  Campaigns manager at Mencap, Dan Scorer said: “We are hugely disappointed at the Government’s weak response to the recommendations outlined in the Confidential Inquiry. While there are some positive activities outlined, the Government does not address key recommendations.

“Independent research shows that over 1,200 children and adults with a learning disability continue to die unnecessarily every year in England because of discrimination in the NHS. This is the equivalent of a scandal on the scale of Mid-Staffordshire every year for people with a learning disability. The lack of decisive leadership by the Government shows a continued failure to place equal value on the lives of people with a learning disability.

“A delayed commitment by the Government to set up a national body to monitor and investigate the deaths of people with a learning disability is a lost opportunity to learn from mistakes and stop this tragic waste of life. Furthermore, it is utterly disrespectful to the families of those who have lost their lives due to poor NHS care.”

Mr Scorer continued: “Since the launch of Mencap’s ‘Death by Indifference’ report in 2007, which exposed how unequal healthcare and institutional discrimination had led to the deaths of six people with a learning disability, there has been little progress. Patients with a learning disability experience delays in diagnosis, delays in treatment, lack of basic care and poor communication by health professionals. This is simply unacceptable.

“The confidential inquiry showed that over a third of deaths of people with a learning disability was due to them not getting the right health care. How many more deaths at the hands of the NHS do there need to be before the Government takes this issue seriously?”