In Awe of the NHS

Hello once again.  The last time I wrote to you I was waxing lyrical about my Caribbean cruise, well, it didn’t take long for me to come down to earth with a bump.

In the final few days of our cruise we learned that my wife’s mother Jean, a lovely 89-year-old was suddenly taken seriously ill. At almost the same time, I took to my bed with the worst case of flu I have ever experienced. Four days under a duvet and then as weak as a kitten for three weeks afterwards. My illness meant that I couldn’t visit my mother-in-law as often as I would have liked.

Sadly after two months of struggle Jean finally departed this life and we were left to remember a loving, supportive, generous, and caring woman. Her passing caused me to reflect on the NHS and the care that she had received from all the staff who looked after her.

A picture of Jean and her granddaughters wedding
A picture of Jean at her granddaughter’s wedding

Jean spent two months in the hospital, first in intensive care and then on surgical and rehabilitation wards. What you notice immediately, when you spend any time in an NHS hospital, is that the doctors and nurses come from all over the world. (Where would the NHS be without immigration?) The second thing that is very obvious is the high number of agency staff working on the wards. The nurses seemed to change on a daily basis so it was rare to see the same person two days running. This inevitably led to things not being followed through, presumably because the handover between shifts with so many ‘temporary’ staff was less than perfect. An example of things falling through the cracks was that monitoring food and liquid intake were sometimes not recorded, this led to increased anxiety for us as we couldn’t tell whether Jean’s lack of physical improvement was due to not drinking or eating enough.

Another significant issue facing staff was the high turnover of patients, this was quite extraordinary and the beds on all the wards that Jean spent time on were never empty for long. Many of the patients were elderly and very confused and the nursing staff in particular needed to exercise extraordinary sensitivity in dealing with some of the challenging behaviours that they exhibited. I was in awe of their professionalism and patience.

As many of you know I have been involved in campaigns to prevent assisted dying being made legal in the UK.  I was concerned that the end of life care that Jean might receive would not be of the highest standard given the demands on the staff and other resources, my concerns were unjustified.

In the final days of Jean’s life, everything that could be done to keep her pain-free and comfortable was done. On the night of her death, she was moved to a side room where we could be with her. Her passing was peaceful and dignified, and I’m incredibly grateful to everyone who was involved in making this possible.  We are indeed a fortunate nation to have the NHS and the dedicated people who work in it.

Picture head and shoulders of Blake the black Labrador
Our 13-year-old black Labrador, Blake RIP

Finally just to put a tin lid on what has been a tough few weeks our 13-year-old Labrador, Blake, collapsed, despite the vet’s best efforts there was nothing that could be done to help him. He too departed this life with dignity, and we miss him but differently.

Can’t wait for May!!

Here are the links to the latest news. I hope they are of interest.

Capita faces fresh call to be stripped of PIP contracts

Latest ‘reckless’ DSA reforms could leave disabled students without support

Fears over government links as equality watchdog launches welfare probe

Government ‘must see disabled people as innovators and contributors’

Rail access improvements set for delays… along with nearly £50 million funding

All news provided by John Pring Disability News Service

Winners and Possible losers

Last week was a pretty good one. I attended two evening events the first launched the “OneVoice for Accessible ICT Coalition” a programme aimed at making IT more accessible to disabled people. The other arranged by the Employer’s Forum on Disability demonstrated real progress regarding the portrayal of disability on television. Clips from Eastenders and Hollyoaks plus interviews with producers and actors showed how far things have moved over the last decade.

Sadly the old adage that we take two steps forward and then one back seems true based on this weeks clippings. The Equality Bill has been enhanced after vigourous campaigning but entitlement to disability benefits seems to be more difficult to get based on the latest figures. Drop me a note if you want more information.
Equality bill amendments ‘will transform rights’

Campaigners and disabled peers say two key sets of government amendments to the equality bill will transform disability rights in employment and education.

One series of amendments will tighten the ban – added to the bill at an earlier stage – on employers using health questionnaires to discriminate against job applicants with hidden impairments.

The amendments, added during the bill’s committee stage in the Lords, mean there will be fewer exceptions to the ban and will allow the Equality and Human Rights Commission to enforce the new laws.

The mental health charity Rethink said the amendments “could mark a turning point in equal opportunities”.

They were also welcomed by the disabled peers Lord [Colin] Low and Baroness [Jane] Campbell, who said she felt “very strongly” about the amendments, “having gone through many interrogations from interview panels in the past”.

Liz Sayce, chief executive of RADAR, which has campaigned for more than ten years to outlaw the questionnaires, said banning them was “probably the single biggest difference and improvement that could be made through the equality bill” on employment of disabled people.

She said: “It will build confidence amongst people with HIV, mental health conditions and other hidden disabilities that they will be judged fairly, on merit.”

The second set of amendments lays out new measures to give disabled pupils the right to support at school through access to auxiliary aids and services – such as computer technology to help visually-impaired pupils, or adaptive keyboards – another key, longstanding demand of disability rights campaigners.

Education secretary Ed Balls had pledged to bring in such laws after they were recommended by the Lamb inquiry on special educational needs.

Baroness Royall, for the government, said it was “right and proper that all members of our society…have access to education and the educational aids they need in order to thrive as individuals and to participate as full members of our society.”

The disabled peer Baroness [Rosalie] Wilkins said: “Too many disabled children face barriers to participation in learning and school life, because if they do not have a statement of special educational needs, they have no enforceable entitlement to extra support.”

She said the amendments would “provide many thousands of disabled pupils, and their parents, with the confidence to get the practical support they need to take part in school life”.

The amendments were also backed by Lord Low and both the Liberal Democrats and Conservatives.

Caroline Ellis, RADAR’s joint deputy chief executive, described the new measures as “a big gain” and “a very practical way of boosting inclusion”.
Figures show thousands missing out on employment support

New government figures have confirmed that only a small proportion of people applying for out-of-work disability benefits are “passing” the strict new test, the work capability assessment (WCA).

The government claimed the figures showed that “thousands of people are now moving towards work rather than being left to claim sickness benefit”.

But of the 326,500 people who completed new claims between October 2008 and May 2009, only about 59,000 (18 per cent) were found eligible for the new employment and support allowance (ESA). Of these, about 18,000 (5.5 per cent) do not have to take part in work-related activity.

More than two in five (about 135,000 people) were found to be “fit for work” and so ineligible for ESA and the personalised support it would have entitled them to through the government’s Pathways to Work programme.

The remaining 133,000 claimants stopped claiming before completing the WCA.

Those who “fail” the WCA are placed on jobseeker’s allowance (JSA), and receive £25 less a week, although the Department for Work and Pensions said some JSA “customers” with health conditions can volunteer to be “fast-tracked” to receive “much more intensive help and one-to-one support to improve their employability”.

Campaigning organisations have repeatedly warned that the WCA is inflexible, riddled with errors and fails to reflect disabled people’s daily lives.

Neil Coyle, director of policy for Disability Alliance, said: “We are aware that too many disabled people are being misassessed in an overly rigid system and failing to access the support arrangements that could help them find work.”

But he said he was “hopeful” that the current government review of the WCA would “lead to a more effective system able to identify the needs of disabled people”, with Pathways to Work offered to more people.

Jonathan Shaw, the minister for disabled people, said the government was reviewing the WCA to “see where improvements and changes need to be made to ensure that it is working as it should be”.

The government will start rolling out the WCA to existing incapacity benefit claimants this October. It is also reviewing the effectiveness of Pathways and aims to publish proposals this spring.

The new figures also reveal that, by the end of November 2009, 8,800 claimants had completed appeals against a decision that they were ineligible for ESA, and 3,300 were successful (37.5 per cent).

Previous figures suggested less than a third of claimants were winning their appeals.

News provided by John Pring at www.disabilitynewsservice.com

Musings of the Week

Concerns over first government work test figures

The first official figures showing how the government’s work capability assessment (WCA) is working have revealed only a small proportion of those applying for out-of-work disability benefits are “passing” the strict new test.

Of about 175,000 people whose claims were completed between October 2008 and February this year, only about 32,000 –18 per cent – were placed on the new employment and support allowance (ESA).

Of the 32,000, just under a third were placed in the support group, for those who do not have to engage in work-related activity.

But about 69,000 of the claimants were pronounced “fit for work” and ineligible for ESA, while 74,000 stopped claiming before their assessment was finished.

The assessments – carried out by the government contractor ATOS Healthcare – are supposed to test whether someone requires personalised support to find work and so qualifies for ESA, which has replaced incapacity benefit (IB) for new claimants.

The government is to start rolling out the WCA to existing IB claimants next year.

The new figures also reveal that, by the end of August, 4,900 claimants had completed appeals against a decision that they were “fit for work” and ineligible for ESA, but only 1,500 were successful.

Neil Coyle, director of policy for the disability poverty charity Disability Alliance, said the WCA was “too rigid” and often failed to reflect disabled people’s daily lives.

He said the figures suggest the government’s welfare reforms could fail to secure work for many disabled people, which would be “deeply disappointing”.

He added: “The concern is that too many disabled people are not getting access to ESA and are put on jobseeker’s allowance (JSA), where they do not get tailored support.

“Meanwhile, there are less jobs, more competition for work and rampant employer discrimination, particularly against those with mental health problems.”

He said this risks alienating disabled people and forcing them into poverty, as JSA is paid at a lower rate than ESA (up to £64.30 a week for JSA, compared with up to £89.80 for ESA).

Meanwhile, the government has announced a new Fit for Work scheme, which will encourage employers, GPs and councils to help people who become ill at work to manage their condition and stay in their job so they do not end up on benefits.

Ten pilot schemes will encourage local partnerships to pool funds to develop new services, bringing together support in areas such as health, employment, skills, housing and debt advice.
Government adviser ‘wary’ of legal right to independent living

A senior government adviser has dismissed calls for rights-based laws that would give disabled people a nationally-guaranteed entitlement to independent living support.

Dr Steve Feast, a senior health and wellbeing adviser in the Department of Health, said he would be “very wary” of writing such legislation and then waiting for the results to “trickle down” to disabled people.

Speaking in a debate on independent living organised by the disability charity RADAR following its agm, Feast said he was a “strong believer” in giving council leaders discretion in how they spend their money.

And he said he believed there should be a move away from “big government” and towards flexibility, local innovation, “empowered individuals” and a “needs-based approach”.

But Caroline Ellis, joint deputy chief executive of RADAR, said legislation was needed so that “your ability to live a dignified life…to raise your kids, to love, learn, live and work” was not dependent on your local council.

She said such rights were “far too important to leave to local discretion” and that she had been “really struck with the number of people I have met recently who have had their care packages slashed”.

She added: “We are fed up to the back teeth of postcode lotteries and we are certainly fed up of professionals telling us what we need and how we should be living our lives.”

Disability consultant Haqeeq Bostan said disabled people’s organisations need to show they can deliver services themselves, with ring-fenced funding from central government.

Otherwise, he warned, “we will face fundamental cuts in the services we receive, in the support we have and the means to make the choices we want to”.

The motion they were debating stated that the government’s “vision for social care and support” would only be delivered through “rights-based legislation extending national entitlements” and that relying on local decision-making was a “recipe for disaster”.

Only Feast and Hackney councillor Nargis Khan – who also spoke opposing the motion – voted against it, while 25 people voted in favour and there were eight abstensions.

The debate took place just four days before Lord Ashley’s independent living bill – a private members’ bill that would give disabled people a legal right to independent living – was due to receive its second reading in the Commons.
12 October 2009 Government adviser ‘wary’ of legal right to independent living

A senior government adviser has dismissed calls for rights-based laws that would give disabled people a nationally-guaranteed entitlement to independent living support.

Dr Steve Feast, a senior health and wellbeing adviser in the Department of Health, said he would be “very wary” of writing such legislation and then waiting for the results to “trickle down” to disabled people.

Speaking in a debate on independent living organised by the disability charity RADAR following its agm, Feast said he was a “strong believer” in giving council leaders discretion in how they spend their money.

And he said he believed there should be a move away from “big government” and towards flexibility, local innovation, “empowered individuals” and a “needs-based approach”.

But Caroline Ellis, joint deputy chief executive of RADAR, said legislation was needed so that “your ability to live a dignified life…to raise your kids, to love, learn, live and work” was not dependent on your local council.

She said such rights were “far too important to leave to local discretion” and that she had been “really struck with the number of people I have met recently who have had their care packages slashed”.

She added: “We are fed up to the back teeth of postcode lotteries and we are certainly fed up of professionals telling us what we need and how we should be living our lives.”

Disability consultant Haqeeq Bostan said disabled people’s organisations need to show they can deliver services themselves, with ring-fenced funding from central government.

Otherwise, he warned, “we will face fundamental cuts in the services we receive, in the support we have and the means to make the choices we want to”.

The motion they were debating stated that the government’s “vision for social care and support” would only be delivered through “rights-based legislation extending national entitlements” and that relying on local decision-making was a “recipe for disaster”.

Only Feast and Hackney councillor Nargis Khan – who also spoke opposing the motion – voted against it, while 25 people voted in favour and there were eight abstensions.

The debate took place just four days before Lord Ashley’s independent living bill – a private members’ bill that would give disabled people a legal right to independent living – was due to receive its second reading in the Commons.

News provided by John Pring at jpringnews@googlemail.com