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

Assisted Suicide – the ongoing debate!

Slightly late posting this weeks news items. Two or three reasons for this, probably better described as excuses! First my grand-daughter had her first birthday this weekend so lots of celebrations as you might expect!! Anna was totally bemused by all the fuss and in line with other one year olds concentrated entirely on the wrapping paper, not the presents!! Second reason the b…..y car broke down again and is being removed by the RAC as we speak! Third reason, and the most serious, trying to respond to the flurry of programmes and editorial copy surrounding the assisted suicide debate. As chair of RADAR I have been trying to put across the point that until we can be completely sure that we are providing the very best support and palliative care services available to terminally ill people and their families the discussion about helping them to die is hugely premature! I don’t know if any of you caught the Channel 4 programme about Mo Mowlem. An interesting portrayal of someone and their family trying to cope with a terminal illness. Never any question that Mo wanted to end it all! However it seemed that she and her husband could avail themselves of a great deal of support which made her sad passing the more dignified. Not so for most families trying to deal with the same very difficult situation. Let me know what you think. Have a good week.
Campaigners fight again to hold the line on assisted suicide

Disability organisations have had to line up yet again against any weakening of the law on assisted suicide, following two high profile court cases and the publication of proposed new laws in Scotland.

Kay Gilderdale, from Stonegate, East Sussex, was cleared of attempted murder, having admitted a charge of assisting in the suicide of her disabled daughter, Lynn, who had chronic fatigue syndrome (CFS). She was given a conditional discharge.

Frances Inglis, from Dagenham, east London, was found guilty of murder and sentenced to life, and a recommended minimum of nine years in prison, after a court heard how she used a heroin overdose to kill her disabled son Tom, who had brain damage, because she felt his life was not worth living.

And Margo MacDonald MSP, who has Parkinson’s disease, published her end of life assistance (Scotland) bill, which would allow those “whose life has become intolerable”, and who met a series of conditions, to “legally access assistance to end their life”.

Those who were terminally ill – or “permanently physically incapacitated” as a result of a progressive condition or “trauma” and “unable to live independently” – would qualify.

The disability charity RADAR said it was committed to the principle that “those who have a hand in the death of another person, regardless of that person’s disability or the stated motivation of the perpetrator, should have to answer for their actions before a court of law”.

It said that Tom Inglis’s impairment “did not give another person, even his mother, the right to take his life based on their own judgements”.

And it said that he had “the same rights to legal protection and justice as anyone else, and the prospect of setting out circumstances in which people whose lives are deemed by others to be intolerable can be stripped of those rights is chilling beyond measure”.

Caroline Ellis, RADAR’s joint deputy chief executive, whose teenage son has CFS, said: “Singling out individuals for legalised killing based on their medical condition or prognosis would be discriminatory and repugnant.”

She said the “real outrage” was the lack of effective treatment or support for people with CFS and that she never wants her son to “feel like society is giving up on him”.

She added: “The idea that the law could be relaxed in future to encourage people to give up sends chills down my spine.”

The Equality and Human Rights Commission has yet to finalise its position on assisted suicide, but Mike Smith, the new chair of its disability committee, said he personally did not believe there were “adequate safeguards to protect disabled and older people to allow assisted dying”.

He said: “It is too easy for society to view disability as a negative thing and whilst that is the case there will be coercion and in the current world we live in and the negative views of disability, I have very grave reservations about relaxing laws on assisted dying.”

Alison Davis, national co-ordinator of No Less Human, which campaigns for disabled people’s right to life, said “sick and disabled people living in Scotland will immediately be viewed as suitable candidates for death” if MacDonald’s bill becomes law.

She said this would “inevitably” make it easier for similar laws to be passed elsewhere in the UK.

A poll last year for the Care Not Killing Alliance in Scotland found 65 MSPs were opposed to legalising assisted suicide, with 18 in favour and 24 undecided.
Improvements to equality bill will safeguard ‘holy grail’

A disabled peer has hailed improvements to the public sector equality duty – the “holy grail” of the equality bill – as a “huge breakthrough” in the fight to maintain disabled people’s protection from discrimination.

Baroness [Jane] Campbell introduced the amendments to strengthen the equality duty in the bill so it did not provide a lower level of protection than the Disability Discrimination Act’s disability equality duty.

Her amendments make clear that public authorities – such as local councils or NHS trusts – must not only have “due regard” to eliminating discrimination against disabled people but in doing so must take account of people’s impairments, even if that means treating them more favourably than non-disabled people.

Baroness Campbell said: “Reasonable adjustments tailored to our particular disability-related needs lie at the heart of disability equality. Without them, we are marginalised at the fringes of society.”

The bill as it stood previously could have led to public bodies “thinking that they need to do less to take account of the needs of disabled people than they do under the current disability equality duty…the consequences of that would be disastrous.”

Baroness Thornton, for the government, said it would “under no circumstances” want public bodies to “misinterpret the new duty as imposing lesser requirements than the existing disability duty”.

She said the government was happy to accept the amendments, which were agreed as the bill continued its committee stage in the House of Lords.

Caroline Ellis, joint deputy chief executive of RADAR, said the public sector duty was the most important part of the bill for disabled people, and that the amendments were “absolutely vital” as they ensure that public authorities know that disability “is different to all the other strands”.

Earlier this week, another disabled peer, Lord [Colin] Low, failed to persuade the government to remove the blanket ban on disabled people serving in the armed forces.

Lord Low told the Lords that the blanket ban was “based on a very narrow and outdated stereotype of disability”, that impairments such as severe disfigurement, diabetes and controlled epilepsy would not “necessarily disable a person from active service” and that “everyone should be considered on their merits”.

Baroness Royall said the government would “perhaps” work on his suggestion of drawing up a code of practice on employing disabled people that would meet the concerns of armed services chiefs. But she stressed that this would not be as a part of the equality bill.
Report finds nearly a third of disabled people in poverty

An independent report on income inequalities – commissioned by the government – has concluded that nearly a third of disabled people are living in poverty.

Official statistics previously estimated about a quarter of disabled people were in poverty, but An Anatomy of Economic Inequality in the UK says the figure is probably more than 30 per cent.

This is because the report’s authors believe official measures of poverty should not count those disability benefits – such as disability living allowance – that help cover the extra costs of an impairment.

The report also concludes that there appears to be “straightforward discrimination in recruitment” affecting disabled people, particularly in the private sector.

It says recent experiments suggest that “those disclosing a disability are less likely to be called for interview than those with otherwise identical CVs”.

And it calls for a stronger government focus on boosting the employment of disabled people, particularly those with mental health conditions.

The report says the problem “is most intense” for those with low or no qualifications, and that employment rates for disabled men with low or no qualifications have “fallen considerably” in the last 25 years.

Nearly a third of working age adults who are disabled according to the Disability Discrimination Act (DDA) – and also have a condition that limits the work they can do – have no qualifications, compared with 12 per cent of non-disabled adults.

The report says the average (median) weekly income of men who are both DDA-disabled and have a work-limiting condition is less than half that of non-disabled men (£157 compared with £316 per week). The corresponding figures for women are £131 and £198.

The Equality and Human Rights Commission welcomed the report. Neil Kinghan, its director general, said: “The value of this report is how it pinpoints the combinations of circumstance that create the most acute instances of disadvantage: that as well as socio-economic class, race, gender, disability and other factors still matter very deeply.”

The commission will soon publish research on how employers can improve workplace support for disabled people, for example through reasonable adjustments, and particularly focusing on those with mental health conditions.

Susan Scott-Parker, chief executive of the Employers’ Forum on Disability, said the findings were “a stark reminder” of the barriers disabled people can face, and showed that employers must ensure their appraisal and promotion processes do not discriminate against disabled people.

But she warned that “any work to tackle inequality through employment policies needs to position employers as part of the solution, not the problem”.

News provided by John Pring at www.disabilitynewsservice.com

White Christmas??

It must be Christmas there is snow on the ground! Although I do recall not that many years ago when we had snow at the beginning of the cricket season! So this is the final blog until 30 December by which time many of you will have gained a few pounds, questioned the amount you spent and be preparing for the new year resolutions! I hope that you all have a really good time over the Christmas period and you are able to relax for some of the time!

Now down to business! This week we’ve seen developments concerning the Equalities Bill, Hate Crime and Assisted Suicide.
Disabled peers ready for battle on equality bill

Three disabled peers say they will fight to ensure that the equality bill does not lower the level of protection for disabled people currently provided by the Disability Discrimination Act (DDA).

Baroness [Jane] Campbell, Baroness [Rosalie] Wilkins and Lord [Colin] Low were speaking during the second reading of the bill in the Lords.

Each welcomed the bill – which streamlines existing equality laws – but warned that parts of it provide less protection than the DDA.

Baroness Campbell said the bill could “genuinely transform opportunities over time” but gains made through the DDA must not be “lost in translation in the equality bill”.

She said she was particularly concerned that the public sector duty to promote equality would be weaker on disability equality than the DDA.

And she said the bill fails to make it “absolutely clear” that service-providers cannot charge to provide reasonable adjustments.

She also expressed concern that an immigration measure in the bill could lead to seriously-ill disabled people being denied entry or leave to remain in the UK “in contravention of the most basic human rights”.

Baroness Wilkins said she was disappointed the bill had not adopted a more “social model” definition of disability, to improve on the current situation where discrimination can only be proved if an impairment has lasted a year.

She said it was “a travesty” that so much tribunal time was wasted “arguing about how disabled someone is, rather than focusing on the discrimination that may have taken place”.

But she said she was “delighted” the bill would make it illegal for landlords to prevent reasonable requests from disabled tenants to make physical alterations to communal hallways and entrances, so they are not “imprisoned in their own home”, something she has campaigned for since 2004.

Lord Low said parts of the bill were “particularly welcome to disabled people”, including its reversal of the 2008 Lewisham v Malcolm Lords ruling, which “threatened to wreak so much havoc with the concept of disability-related discrimination”.

But he said several parts “remain of concern to disabled people”, including a clause that “explicitly authorises an exam system that disadvantages disabled candidates” and says minimising this is “merely desirable, not necessary”.

And Lord Low said he would table an amendment to “introduce an explicit duty to provide accessible information”.

Baroness Royall, for the government, said she was “carefully” considering the comments of the three peers, and others, on the public sector equality duty, and would discuss further the issue around reasonable adjustment costs.
Still no justice on disability hate crime, say professionals

The criminal justice system is still failing to take the issue of disability hate crime seriously enough, according to a poll of professionals.

Nearly 50 delegates from local authorities, the Crown Prosecution Service, police forces, central government and voluntary organisations attended theOvercoming a Crisis of Justice conference on disability hate crime.

During a voting session at the conference – organised by Westminster Briefing – nearly four-fifths of delegates said the criminal justice system failed to take disability hate crime as seriously as other hate crimes.

Nearly seven in ten said the court process was “unfriendly and inaccessible” to disabled people.

And 86 per cent said they believed that not enough was being done to ensure that disabled people were seen as targets of hostility, and not just “easy targets”.

But nearly half the delegates said that tackling disability hate crime was high on the agenda in their local area.

Katharine Quarmby, author of the Getting Away With Murder report on disability hate crime, who spoke at the conference, said there was a feeling of “real disappointment and frustration” that the criminal justice system was still failing to treat disabled people equally.

She said: “It was an audience of very highly-skilled professionals with a really good understanding of what’s happening on the ground.

“If they are so disappointed in the criminal justice system, it really shows that the system hasn’t changed.”

Quarmby said the conference also underlined the urgent need for research to discover what motivates offenders to target disabled people in hate crimes.

But she said she was encouraged that criminal justice agencies appeared to be much clearer that lower-level harassment of disabled people often develops into something much more serious, such as hate crime murders.

Stephen Brookes, coordinator of the National Disability Hate Crime Network, who chaired the conference, said he was encouraged that delegates had recognised the importance of taking such harassment seriously and “looking more systematically at this lower level of crime”.
Guidance on assisted suicide law ‘must be toughened’

New guidance aimed at clarifying the law on assisted suicide must make it clear that nearly everyone who helps a person to kill themselves will be prosecuted, according to leading disabled activists.

Not Dead Yet UK (NDY UK) was responding to a public consultation on interim guidance published by the director of public prosecutions (DPP) in September.

The DPP laid out interim guidelines for England, Wales and Northern Ireland after the Law Lords backed Debbie Purdy’s demand for the law to be clarified.

Purdy, who has multiple sclerosis, wanted to know in which circumstances her husband would be prosecuted if he helped her end her life at the Dignitas assisted suicide centre in Switzerland.

But NDY UK – whose members are disabled people campaigning against assisted suicide – says pro-euthanasia campaigners are trying to use Purdy’s case to “change the law by the back door” by “creating the impression that those who assist in a suicide will be immune from prosecution”.

NDY UK’s views have been endorsed by a swathe of influential disabled people’s organisations, including the United Kingdom’s Disabled People’s Council, RADAR and the National Centre for Independent Living.

Many disabled campaigners were angered by the interim guidance, which lists factors to be considered in deciding whether to prosecute.

It says a prosecution is less likely if the victim had a terminal illness, a “severe and incurable physical disability” or a “severe degenerative physical condition”.

But NDY UK says in its response to the consultation that a presumption that anyone assisting in a suicide would be prosecuted would protect those who feel pressured to kill themselves and reassure them that society valued their lives.

It would also send a message to those working in palliative care and hospices that their work was valued and “put the brakes on a growing negative culture, which does not value the lives of all people equally”.

And it would ensure the policy does not discriminate against disabled people, sending out “a very clear message that all people should be protected under the law, in the same way, with the same respect”.

NDY UK says the DPP should only be able to decline to prosecute if the suspect only assisted after “protracted and persistent pressure from the victim”.

NDY UK says this is the “only potentially acceptable factor against prosecution”, although there should be evidence that the suspect resisted this pressure and sought help from professionals to try to avoid the suicide.

A final policy is expected in the spring.

News provided by John Pring at jpringnews@googlemail.com