Sep 132014
 

DPAC have been served with a Cease and Desist letter from a healthcare provider after they published details of how a disabled man in Ireland has been treated. I am reblogging their recent post in support of them.

DPAC has removed our most recent piece on Anthony Kletzander from our website due to a ‘cease and desist’ letter from solicitors representing Nua Healthcare threatening legal action against us for raising awareness of the case. DPAC have published pieces on Anthony and his situation since late 2013. We firmly believe that Anthony’s desire for independent living, instead of institutionalisation should be upheld, as per Article 19 of the UN Convention on the Rights of Persons with Disabilities. We also believe that we have a duty to raise public awareness on Anthony’s experiences.

We will continue to campaign and to support Anthony, his parents: Linda and Sigi and his chosen advocate Joe Whittaker in any way we can. Anthony’s parents Linda and Sigi kindly agreed to an interview from their home in Ireland. We are grateful for their time and honesty.

Interview
As you may know supportive web sites and grass root disability groups in the UK and Europe received a solicitors ‘cease and desist’ letter regarding talking about Anthony’s circumstances, we can not talk about that specifically, but as Anthony’s parents and his legal guardians-what are your thoughts on:
 
a) the suggestion of the protection Anthony’s ‘confidentially’ :what has Anthony said to you on this, what is it that he wants to say about his circumstances? And as his parents what is it you would like to say?

Anthony repeatedly asks us to get him out of Nua and that he wants independent living in his own home near to his family. We fully support Anthony and take our lead from Anthony. He wants us to do whatever is necessary to help him to get back to independent living

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b) We understand that Anthony’s chosen means of communication has been denied, can you tell us a bit about that?
Despite the fact that Nua were given Speech and Language reports from two Health Service Executive (HSE ) Senior Speech and Language Therapists, Speech and Language report from Central Remedial Clinic Speech Therapist and Marion Stanton communication expert in U.K no staff at Nua are trained up in his communication  Marion offered to come to Ireland (in March 2014) to train Nua staff, but Nua did not invite her over in fact Noel Dunne said on the phone that they would get their own experts.

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2.Anthony lived in his own flat with his own personal assistants for almost 3 years – why do you think it is proving so difficult for Anthony to exercise his right to independent living by living in a place of his own choosing now?
 

Having had independent living from 2010-2012 with Cheshire Ireland where Cheshire took a back seat, we recruited Anthony’s staff with Anthony, put together a schedule which Anthony helped in planning and we negotiated with Dublin City University (DCU) and Anthony attended DCU lectures which is something he always wanted to do. In 2013 Anthony service was given over to Áiseanna Tacaíochta Network (ATN) by HSE with no meaningful negotiations with Anthony or us, no explanation was given. Martin Naughton the Director of ATN carried out the negotiations with Geraldine Murphy HSE Disability Manager. Martin then imposed his staff on Anthony, none of which believed in Anthony’s communication and Anthony’s whole quality of life suffered a great deal under the service of ATN. Martin tried to dictate visiting hours for Anthony, restricted his movement. Basically we had to go to Anthony’s home every evening to take Anthony out as he was effectively under virtual house arrest. Martin also applied to the Dept of Social Protection to have Anthony’s personal disability allowance payment paid into the ATN company. Following Martin’s email we contacted the department objecting and it took about a year to sort out the stoppage of Anthony’s payment due to ATN’s actions.

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3.What does Anthony say to people fighting the campaign to get him independent living?

Anthony continues to ask us to keep the campaign going. He also appeals to us to ask Nua to stop the forced medication on him. Anthony has know Joe (Whittaker) for about 11 years and always asks us to ask Joe to continue the campaign for him.  We always reassure Anthony that Joe and we his parents are continually campaigning and won’t stop until Anthony is released to Independent living. We need to keep repeating this to Anthony to try to help him to survive his time with the Nua institution

4 What efforts have HSE made to discuss Anthony’s wishes for independent living with you and Anthony?
 
Possibilities Plus offered HSE their service to provide Independent Living. Geraldine Murphy has told them that as far as she is concerned the Nua arrangement is permanent.  We continue to write to Sheila Marshall the other Disability Manager involved.

5.Who do you recognise outside the family as closest to Anthony and who has Anthony chosen as an advocate?
Anthony chose Joe Whittaker as his advocate and we keep Anthony informed about the campaign. We Anthony’s parents feel encouraged and very appreciative of Joe’s on going support. We are all grateful that many more people know what is going on and we really appreciate all the support that Anthony is being given by growing numbers of people.

6.Prior to Anthony being institutionalised did Anthony have a history of hospitalisation

No, prior to ATN taking over the management of Anthony service, Anthony was on a strict gluten and dairy free diet. He was not given ANY medication but took natural supplements. When ATN took over Anthony’s service ATN stopped Anthony’s special diet against the advice of the family doctor claiming that they found him to be “often hungry”. This caused Anthony pain and subsequently contributed to his virtual “house arrest”.

7.When did forced medication start for Anthony

Anthony was medication free when he entered Redwood ( a prior institution). However three days after he entered Redwood we got a phone call confirming that Anthony’s crucial special gluten and dairy free diet was not being adhered to by Redwood and that they were giving him medication.

8.Did Anthony have a history of being hospitalised prior to being institutionalised

No. Despite the fact that we gave Redwood Anthony’s GP letter and met with Management when we were told that Anthony was been given medication and that his diet was not adhered to. Anthony was hospitalised by emergency ambulance with seizures for the first time in his life. Tests showed no epilepsy.

9.Did Nua continue with the drugs regime

When Anthony started in Nua he was not drugged according to our information. However in March 2014 Anthony was admitted to hospital by emergency ambulance. Since Anthony started in Nua he has been admitted twice to hospital by emergency ambulance and continues to be medicated.

10.Did Nua give you the list of Anthony’s medication

No despite the fact that we repeatedly asked Nua for the list of Anthony’s medication they refused to give it to us. We finally got the list of medication when our solicitor requested the medication list from HSE when Sheila Marshall, Disability Manager issued the medication to our solicitor so we then had access to this crucial information.

11.How does Anthony spend his weekdays

When Anthony started at Nua we attended a conference explained the significance of training for staff of Anthony’s communication. We also told everyone who attended the meeting from HSE and Nua that Anthony hates farms.  He attends the Nua farm daily where we recently witnessed Anthony shovelling manure into a wheelbarrow in a highly distressed state and being told “good boy keep going”. Anthony is a 26 year old man not a “boy”.

photo anthony

12.How did Anthony appear on your recent visit to him on the Nua farm

When we drove into the car park we could hear Anthony’s anguished sounds and rushed to find him. We were shocked to see him shovelling manure into a heaped wheelbarrow. Anthony’s anguished sounds increased significantly whilst bringing the heaped wheelbarrow down the very steep hill to the lower Nua gardens. We emailed Nua voicing our concerns but received a registered letter from Nua yesterday informing us that Anthony has been returned to the farm as of 8 September 2014 so we continue to worry significantly about Anthony’s health and safety in Nua.

13. What would you say to parents/people in a similar situation to that of Anthony?

We would say never give up. Everyone is entitled to be listened to, no one’s basic human rights should be abused. We would encourage people to speak up if they can.

14.What would you and Anthony say to the people supporting Anthony?
Anthony is continually thanking people for their support which he needs to stay strong. Anthony is particularly grateful to his and our friend Joe Whittaker

Video of Anthony typing thank you to supporters

 

If you can help please contact Anthony’s chosen advocate Joe: whittakerjoe5@gmail.com

Abbreviations

ATN Áiseanna Tacaíochta Network
DCU Dublin City University
DPAC Disabled People against Cuts
HSE Health Service Executive: responsible for the provision of healthcare providing health and personal social services for everyone living in Ireland, with public funds.

Mar 142014
 

investment-small-1I just put in a complaint to Leonard Cheshire Disability (LCD). (Out of character, huh.) It is as follows:

…”Inter alia, you explained that the home is having difficulty recruiting carers and that carers and good quality carers are not applying for our posts.

I volunteered the opinion that whilst we are lucky in that many staff working for us do so despite the poor pay (as staff provide excellent service through a commitment to ensuring good quality of life for service users, despite the poor pay), we may have more success in recruiting and retaining decent staff if we offered the Living Wage. Given how much residents pay per week, I think it should be entirely possible for the home to pay carers the Living Wage.

The Living Wage is an initiative intending on reducing poverty in the UK. It has high profile, non-partisan support. As well as being morally right, it has important benefits for employers. Here are some benefits. An independent study proved that 80% of employers believe that paying the
Living Wage enhanced the quality of staff work, reduced absenteeism by 25% and that two thirds experienced improved recruitment and retention.

I want some of that. I want less absenteeism, easier and better recruitment with more and better quality applicants, and better retention. I think it would make a major difference to residents’ quality of life and experience of the service.

The Living Wage is currently £7.65 per hour outside London.

I can’t find any job adverts for Wharfedale, but for the next nearest care home (Champion House), there is currently a vacancy for a care assistant offering £6.31 per hour basic (i.e. the Minimum Wage) plus 25p per hour for relevant qualification in health and social care plus 20% enhancement for nights/weekend working. I.e. £6.31 per hour, rising to £6.56 for the NVQ for daytime work. This is just 82 to 86% of the Living Wage.

Wharfedale House (care home I live in) should be able to afford to pay the Living Wage.

The Telegraph reported in November:

On average, in England, the cost of providing residential care, including the care home operator’s slice of profit, is worked out at £563 per week

(Of course, being a charity, the profit doesn’t apply to us.)

Breaking this down more regionally, according to this not-for-profit company, the average charge for placements in non-nursing care homes in Yorkshire for
2012-2013 was £463 per week.

I know that currently Wharfedale House is paid £986 per week for my care. This is by no means out of character for the fee in the home: in June 2012, Leeds City Council indicated (PDF) that the median fee paid by them for placements at Wharfedale House was £840.08.

To pay carers the Living Wage would require an increase in the wage bill of approximately 20%. Yet going by the above median fee, Wharfedale House charges 80% more than other care providers. Unlike private sector care providers, Wharfedale House doesn’t make a profit. We should clearly be able to afford to pay carers 20% more than the minimum wage.

I would like to raise a formal complaint that we do not pay our carers the Living Wage. Failing to do so devalues and dehumanises those who provide the most difference to our everyday lives: those who provide residents’ personal care and support. It has a consequent effect on our care as it affects our ability to recruit and retain decent carers. This has a direct consequence for the experience of service users such as myself.

I will not accept any argument in response to the complaint that states that LCD pays in line with industry standards, or that Wharfedale isn’t out or the ordinary, or that LCD can’t afford it. The fact that the rest of the industry also undervalues and devalues carers should have no bearing on our ability to “break the mould” by paying more. We should be setting a standard.

I will also not accept any argument that we cannot afford it; for the above reasons, but also because the residents are not involved in the budget setting process for the home, nor are we even informed as to how our fees are divided up and spent. There is no transparency.

By way of resolution to my complaint, I would accept and expect the following:

1) 20% increase in the rate of payment for care assistants / support workers

2) Should LCD refuse that, that Wharfedale House leave Leonard Cheshire Disability (who after all don’t own the building) and move to another provider who can provide the same or better service at the same or lower cost and with 20% increase in carers’ wages.

I am convinced that if LCD claim they are unable or unwilling to provide the increased wage, third party companies would be able to do so whilst providing the same or better level of service, the same or better staffing levels and a profit for any shareholders, without increasing the fee. This would be of significant benefit to Wharfedale House employees and service users.

I am also convinced that the benefits brought about by the improved pay rates would more than make up for the loss of any perceived benefits of being part of Leonard Cheshire as an organisation; and that leaving LCD would also have many other benefits for the home, its staff and its residents.

Thank you

Doug Paulley

 

I won’t hold my breath.

Thanks as ever to the most excellent cartoonist, Crippen

Mar 092014
 
cartoon by Crippen

Mark Sanderson has left.

This is the guy who tweeted “It’s albinism not albinos, dummies” in response to a media article, after being appointed Head of Quality Improvement at Leonard Cheshire and whilst still working for Mencap. When I tweeted a challenge to him using the word “dummies” as a pejorative, he complained to his bosses, saying that he found this as unwanted and unwarranted harassment, that other staff have experienced similar and that staff should be protected from me.

His boss initially supported him, agreed that me following him and challenging him on Twitter (where he’d publicly identified himself as HoQI at Leonard Cheshire) was inappropriate and asked for (and received) permission to show the Chief Executive, but eventually made him send a weasel worded apology when I kicked off. They wrote it, and then he watered it down till he could “live with it”. Following which he deleted the tweet then denied ever making it.

Eventually, following an investigation into the handling of my complaint about his reaction to my tweet and the subsequent critical report by Leeds City Council, LCD was forced to apologise.

I must say myself and other social care service users haven’t noticed social care quality provision by the charity improve whilst he was Head of Quality Improvement (for less than two years.)

Linked In still has him down as “Successful Strategic Manager” working at Leonard Cheshire Disability. I just hope that wherever he is working, he’s got more commitment to service users, integrity, honesty and professionalism than he demonstrated with me whilst working at Leonard Cheshire.

Thanks as ever to the most excellent cartoonist, Crippen

May 082013
 

Many here will know that I am a train fan, also that I’m a wheelchair user, and sometimes the two don’t mix. I have a family funeral at Enfield Crematorium in a couple of weeks, so I needed to book train travel. I thought I would list what happened as I tried to book train travel this afternoon.

I have had confidence issues with public transport for the last year, just starting to use trains again. I’m sure you can understand that I needed this to go as smoothly as possible.

  1. I looked up train times yesterday (preparatory to booking a carer.) If I was non-disabled it would be simple: train from Leeds to London, underground to Seven Sisters, train to Turkey Street, which is right next to the crematorium. All done online, no problem – information, tickets booking, everything.
  2. I’ve done Leeds to London many times, so I know that is accessible (when the assistance turns up). But I don’t know about Sevenoaks or Turkey Street. So I went on the National Rail Enquiries website to see station facilities for Turkey Street. My heart lifted:

    Step free access coverage: Yes

    But what’s this either side of it?!

    Ramp for Train Access: no. Step Free Access note: no

    This station says it has step-free access. But what does “Step Free Access note: no” mean? And this station truly has no ramps?! That makes no sense. Sigh. I would obviously have to check that out.

  3. Next step: what about Seven Sisters station? I checked the step-free access guide – bummer. No access. So what to do? I used the TFL Journey Planner specifying step free access. I don’t trust the buses in London having previously had journeys take longer than they should have, so I unticked that option too. It told me to catch the underground from Kings Cross to Liverpool Street and change there. Good.
  4. Onto the phone (which I hate.) As my first train will be operated by East Coast, I phoned their assisted travel line. Having got through their “Press X” and “Press Y” phone system and queue, I told the assisted travel operator I want tickets and assistance for a journey. She explained if I want both together, that’s from a different department which is short-staffed, but that she would try to put me through. I was on hold for a while, then I spoke to a man. I explained my journey and asked if Turkey Street is accessible? He too was confused. He said the various information available to him was contradictory. He suggested booking the tickets and assistance then phoning Greater Anglia who own Turkey Street station. I thought this wasn’t very helpful and suggested instead that I should book the whole thing through Greater Anglia. He agreed and supplied their phone number.
  5. I phoned Greater Anglia assisted travel. After a long period on hold, I spoke to a very helpful woman. I enquired about Turkey Street Station’s wheelchair access. Much consternation; she looked it up on the National Rail Enquiries website, which said it is fully accessible, but also consulted a map of the station, which shows access only via steps! She was at somewhat of a loss. She noted the station is only manned until lunchtime, and asked if she could arrange for herself or a colleague to phone back tomorrow when it was open, to confirm? I explained that this wasn’t appropriate as I need to make firm bookings for carers, transport this end and so on, for a family funeral. She said she would phone customer relations and get back to me.
  6. She phoned back quickly. She confirmed for definite that Turkey Street is definitely not accessible for wheelchair users. She said that the information on the National Rail Enquiries website is incorrect; that she doesn’t know why, but that this information is maintained by a different company.
  7. She said that the only option for travel is that the company will book a taxi from the nearest accessible station. I asked which is the nearest accessible station? This information, of course, should be on the National Rail Enquiries website – but it isn’t; and even if it was, I don’t think I could be trust it.
  8. Herein a problem. We were both reduced to consulting maps, looking up individual stations on the National Rail Enquiries website etc. because it transpires that Greater Anglia (who run trains solely in East Anglia and from there to London) have situated their assisted travel service in Scotland. With the best will in the world, therefore, her local knowledge is limited.
  9. I noticed the National Rail Enquiries website indicated that Enfield Lock station (half a mile from the crematorium) is accessible. She checked on her map of the station – and joy of joys, yes it is! There’s a level crossing enabling level access to both platforms. Problem solved – or so I thought.
  10. She raised another problem. Enfield Lock station is only manned (as National Rail call it) until lunchtime. So there will be nobody available to put down a ramp for me to get on the train for my return jouney. Surely not a problem, said I in all innocence, the guard can put down the train’s ramps. Not so. She went off to consult a list, and came back to tell me that – like many of their services – this train does not carry ramps.
  11. This is utterly extraordinary. I’ve never heard of this before. I’ve had all sorts of problems on trains:
    • being left on a train that wasn’t fully in the platform so that “my” door wasn’t next to the platform and couldn’t be opened (and unlike people who can walk I couldn’t get up the train to another door!)
    • being put in the guards van (don’t RIP Connex South Eastern!) or stuck in vestuble areas as doorways were too narrow for me to get through
    • the wheelchair space being occupied by prams, pushchairs, luggage and even on one memorable occasion a jazz band
    • many instances of booked assistance not turning up

    But trains not carrying wheelchair ramps? That’s a new one on me. Utterly unacceptable.

  12. By now I was losing the will to live. To give her her due, this (very pleasant, diligent and helpful) woman wasn’t for giving up. She worked something out. For the outward journey, she would sell me a ticket to Enfield Lock and arrange all necessary assistance (except with the London Underground connections, I have to book that separately of course.) For the return, she would sell me a ticket from inaccessible Turkey Street station.. The railway company will then be obliged to supply a taxi from that station into London to enable me to catch the Leeds train. She will confirm this today or tomorrow, as the assistance department doesn’t have permission to book taxis – this has to be given elsewhere in the company.
  13. This indefatigable woman then booked my assistance and tickets with me, took the money and gave me all the relevant details and reference numbers. She was briefly foiled by their address system which refused to accept the length of my home’s name, but I suggested a way round that. I insisted she gave me the reference numbers; she said that the ticket collection reference should be emailed to me, but I didn’t want to risk it not coming through. (I’m glad I did insist as the number didn’t come through on email. Lol.) So now I just have to wait for the phone call confirming the taxi booking. Also, of course, to phone and book assistance on the Underground.

All in all, that was two hours on the phone. On top of that, I have done lots of looking up trains on the Internet, checking of individual station facilities, working out accessible tube travel etc. etc. On top of which, I have to arrange a one to one carer (my usual one being unavailable that day), book wheelchair accessible transport from Leeds to my home etc.

I had gone to bed this afternoon, feeling ill after a bad night, and intended on going to the theatre with friends this evening. However I was awake all afternoon dealing with this, and now I don’t feel well enough for the theatre. I have had to stand my friends up. In the process, I’ve also got blooming frustrated!

Now any non-disabled person in a similar situation could have gone on the first website, looked up train times and booked the trains all in one go in perhaps 10 minutes flat. Just because I am a wheelchair user (actually, just because the various train companies aren’t geared up for wheelchair users!) that process took me hours.

It could have been worse. Imagine what would happen if I had (quite understandably taken the National Rail Enquiry website at face value and assumed the nearest station actually is accessible? I would have just booked the tickets and assistance to the inaccessible station, then on the day I’d have turned up at the destination, unable to get off, and probably missed the funeral!

Is this equality?

May 062013
 

OK not political, FoI or Disability related for once.

I’ve been busy recently writing two Weather websites. The first, Wetherby Weather, started from a bargain basement purchase of a weather station on eBay. Using Cumulus and various utilities written by generous and talented third parties, that data is put on the Web – realtime and archived – as well as being supplied to various weather networks round the world. I log wind direction and strength (average and gust), also temperature, barometric pressure and humidity.

What do most people look at weather websites for, though? The forecast. The best I could achieve with that was the Zambretti automatic short-term weather forecast. That’s reasonable for a few hours, if a little less than descriptive – but not much more than that. I linked to the Met Office forecast – but ideally wanted to produce my own.

WXSIM fits the bill perfectly. It’s just been adjusted to work with Cumulus. It is customised for Wetherby. It takes aviation weather data, meteorological station, weather buoys, ozone measurements, data from regular weather balloon soundings and the outputs of the global forecast system. Starting with the current and historical data from my weather station, and using carefully tailored internal algorithms, it models various elements of the weather over the next few days.

It models temperature, dew point, precipitation, barometric pressure, wind direction, strength and gusts at various levels, advection, soil moisture, Ultraviolet radiation, visibility, wind chill, humidex, evapotranspiration, cloud cover at five atmospheric levels, and other things beyond my ken, to produce a detailed and accurate weather forecast.

I perform some manual forecasts; then my system runs the model and updates the forecast 8 times a day automatically based on the decisions I made in my last manual run.

The detailed forecast is then uploaded and is available on the Wetherby Weather website. It’s also available on the iPhone / Android Wetherby Weather site, as a daily email from the free Wetherby Weather mailing list, via the Wetherby Weather Twitter feed and the Wetherby Weather Facebook profile. I also upload photos, and commentary on any unusual weather events happening in Wetherby.

Then I went away. There’s a fabulous place I go regularly; a disability respite and outdoor activity centre on Kielder water. It sounds trite but the Calvert Trust Kielder has changed my life. It’s made me aware of what can happen with a staff and organisational “can do” attitude and atmosphere; as opposed to some less helpful attitudes from other organisations I could mention. It’s been a challenge and a comfort over the past 10 years; a genuine respite – particularly during the shameful abuse and eviction attempt by Leonard Cheshire..

I ruminated that finding an accurate forecast for Kielder is difficult. A decent, customised forecast for Kielder would be invaluable. With my recent experience with Wetherby, I knew that I could set up a forecast for Kielder. So I did. See the Kielder Weather website and Kielder Weather mobile site, also the Kielder Weather Twitter feed and Kielder Weather Facebook profile.

The Calvert Trust Kielder feature my forecast on their homepage, and published a news article about my forecasts.

So what now? I archive both sets of forecasts and will be tweaking them against actual data observed – though this is proving somewhat difficult to obtain for Kielder. I am hoping to increase the accuracy of my forecasts.

I’m in the middle of an Open University course on meteorology (having got an existing degree in Earth Sciences and IT through them). No doubt that will inspire me further in new directions!

Oct 102012
 

My ex-carer is being deported to Malawi. She’s claiming asylum as she is a lesbian; society in Malawi is strongly anti-gay, so much so that last year the government introduced a new law specifically against lesbianism. She faces returning to a forced marriage to an abusive husband, and lifelong denial of her sexuality on threat of State or community punishment. The Home Office are refusing to believe her. Please do sign this petition.

May 292012
 

The Care Quality Commission (CQC) has come in for somewhat of a bashing recently. But I didn’t think they would lie as well.

In response to a recent documentary exposing care home abuse, CQC said the following in their media statement:

CQC carries out an unannounced inspection of every care and nursing home in England every year – more often if we believe people may be at risk. This system of regulation can and does identify poor care which CQC then takes action to tackle.

What?!

A quick look at the five care homes I’d stayed in in the last year revealed last inspection dates as follows:

  • Summer 2010 (in response to a specific incident, last “proper” inspection November 2007)
  • January 2009
  • November 2009
  • February 2011 (in response to specific allegations)
  • December 2009

Not one was inspected in the past 12 months. 0%.

Personal experience with looking for care homes for a relative confirmed the impression that most care homes have gone well beyond 12 months without an inspection.

I smelled a rat. So I asked CQC how many homes it had indeed inspected. The response came. Answering a slightly different question, CQC admit they did 13,082 inspections of care homes over the last 12 months. There are 17,756 care homes. So at least 26% of homes didn’t get inspected. I say “at least” as where CQC identifes problems at a care home they conduct more than one inspection. (hence why I think their FoI response is disingenuous.)

Let’s look at these once again.

  • “CQC carries out an unannounced inspection of every care and nursing home in England every year – more often if we believe people may be at risk.”
  • Of the 17,756 English care homes, CQC did 13,082 inspections over the last 12 months.

Is it me, or do the figures not add up?

Where did this come from?

The sad thing is we always knew CQC would be an appalling, incompetent mashup.

It was formed from a merger of the Healthcare Commission, the Commission for Social Care Inspection (CSCI) and the Mental Health Act Commission a couple of years ago. Having worked with CSCI, who were at least trying to do things right, me and other service users raised the concern that it would follow the sad precedent of the subjugation of disabled people’s rights following the Disability Rights Commission being subsumed into the Equality and Human Rights Commission. Sadly, we were right. Our concerns that social care would always be lower priority than healthcare were realised.

It didn’t help that the new body was given new, overarching registration standards. These same standards applied to all bodies registered – from acute hospitals, to dentists and care homes. The result being the emphasis on residents rights was lost, and the regulations simply weren’t specific enough for the situation. We lost rights in the change.

Then CQC sacked 70% of its inspectors so that it could register dentists. They adopted what they acknowledge as light touch regulation. They ceased grading care homes, and largely stopped inspecting them. The majority of care home reviews became based on self-declaration by care home managers. Inspections became very rare. Now, precisely which poorly performing care homes would state this to the regulator do you think?

Abuse

All this came to a head during the very sad and distressing Panorama documentary of the systemic abuse of people with learning difficulties at Winterbourne View. CQC became a very public whipping boy, held accountable for a lot of what happened. Much criticism resulted, including a select committee and the PM criticisng CQC for reducing inspections. Many made a comparison with the seminal Silent Minority documentary exposing the “care” of people with learning difficulties in institutions in the early 1980s. (Documentary available to view online – very distressing too.)

Meanwhile, there’s been blood on the carpet and accusations of gagging orders on staff etc. CQC has become a toxic brand. It’s been desperately attempting to reinvent itself, so far (in my view) failing miserably.

Consequences

If it wasn’t so serious, this would be funny. The reality is, though, that people are suffering as a result of this disgusting shambles. Care home residents are some of the most vulnerable, most disadvantaged, most disempowered people in this country. Abuse is the norm, not the exception in my experience; it just varies in degree. Without an effective regulator, the thousands of people in care homes up and down the country suffer even more abuse, poor treatment, curtailment of life opportunities.

CQC are ineffective, stuffed up, an ineffective regulator who lie about themselves to try and stop the torrent of legitimate criticism aimed their way. They are beyond redemption and need replacing.

(With grateful thanks as always to the wonderful Crippen for his inciteful cartoon :-)

Jan 182012
 

Amongst the various other things that annoyed me about yesterday’s shameful treatment of disabled people courtesy of the Lords (et tu, Lib Dems?) was a vomit-inducing self-congratulatory homily by Lord Low, who spearheaded this (admittedly influential) report on the withdrawal of mobility allowance for people in residential care.

Readers may remember that this nasty proposal was born out of invented assumptions that people in residential care have all their mobility needs met by their funding authorities, that they are similar to people in acute hospitals who don’t have mobility needs and (we suspect) due to an assumption that this seldom-heard and severely disempowered group would be unable to defend themselves. Others cynically (though perhaps correctly!) suspected this was the sacrificial clause designed to enable the Government to save face on the remainder of their cripple-kicking, disempowering, undemocratic and lying Bill.

Disabled people were naturally incensed. People from all sorts of backgrounds put in a huge amount of effort to point out the “inaccuracies” in the assumptions inherent in the proposal, and the dramatic negative effect this would have on residents’ lives. Some examples include Bendy Girl’s radio interviews, my oral and written evidence to the Joint Committee on Human Rights (PDF file), and our home’s residents who got our MP to visit to correct his assumptions and to raise our concerns. And these examples are a drop in the ocean compared to the huge amount of effort put in many different ways by a lot of disabled people to make the Government change its mind.

Yet in this extraordinary speech (with supposed false modesty!) Lord Low claims responsibility for the U-turn on behalf of the secretariat (provided by two charities for, not of, disabled people) and the other half for Members of Parliament’s common sense! Shamefully, he made no mention of the work done by disabled people up and down the country to overturn this odious proposal.

There is more joy in heaven over one sinner that repenteth than over 99 just persons who need no repentance. For that reason, I greatly welcome the Government’s decision to drop their proposal to withdraw the mobility component from those living in residential care. I have been given some credit for bringing this about with the review that I was asked to lead by Leonard Cheshire Disability and Mencap, but I think, in all honesty, I must disclaim this. Half of that is because I had a very good team working with me, supported by an extremely able and hard-working secretariat from both organisations; and half because I think Ministers, to their considerable credit, largely came to their decision of their own accord. Perhaps I may have provided a little cover for a U-turn-if so, I am glad to have been of service.

Pass the bucket.

Lord Low, as a disabled person himself, should be ashamed for continuing the traditional disempowerment of disabled people by continuing the enforced misapprehension that they cannot speak for themselves, that their words and actions don’t have power, that other people can more effectively speak for them. His lack of acknowledgement of disabled people’s actions yesterday is a breathtaking rebuff of the Disabled People’s Movement.

I know I shouldn’t be surprised as this sort of behaviour is by no means new. After all, as ex-chief of the Disability Rights Commission Bert Massie says, we shouldn’t expect publicly funded charities that act as proxy providers of public services to bite the hand that feeds them. (I’m looking at you, Leonard Cheshire Disability and Mencap, who provided such vital secretarial support to the Low report.)

He pointed to the “superb” Responsible Reform report – published this week by disabled activists – which accused the government of misleading parliament over disability living allowance reform, as a demonstration of why the voluntary sector’s independence was so important.

He said that any charity that decided it was unable to produce such a report because of the risk of annoying the government had immediately been “compromised” by signing a contract to provide services.

But Lord Low’s speech is such an inexcusable, self-congratulatory, brown-nosing, odious homily to disabled people’s disempowerment, I couldn’t resist this rebuttal.

Aug 282011
 

“Unreasonable” residents

“Unreasonable” residents

Being in residential care, we often get labelled as “unreasonable”. We get told it’s “unreasonable” to want the toilet at short notice, “unreasonable” to expect assistance to access the community, “unreasonable” to want to get up at a certain time, etc. etc.

Whenever and wherever there’s communal living, and particularly where there’s communal care, there obviously has to be a certain amount of give and take and consideration of other residents to oil the social wheels. But in “care land“, (a different place with apparently very different social rules, norms and expectations from the rest of humanity), there’s a lot more expected. Unreasonably, in my opinion.

Sometimes these are quite extreme – e.g. being told it’s unreasonable to want to go to the toilet instead of using the bed (video, see V Elman’s story), or to have a comfy bed and be able to get out of it occasionally,

One memorable Christmas day, a care worker told me it was “unreasonable” to want a shower. It wasn’t fair on the other residents, as staff should be spending time with them, unwrapping their presents. This last one shows a relatively common element: psychologically blaming residents for being “unreasonable” to other residents.

Today was a minor one – staff strongly implied it was unreasonable of me to get up early so I could go to Church, and that it was particularly unreasonable for me to expect to get up at my own normal pace, as the people who normally get up at that time were waiting and being inconvenienced. (I should immediately point out that of course I didn’t take this lying down [pardon the pun] and that the situation has since been largely resolved; also that whilst my experiences are common it’s worse in other care homes and it’s not all care staff…)

 

Why are residents “unreasonable”?

It’s my experience that residents are branded as being unreasonable for the following main reasons.

  1. For perfectly reasonable behaviour that would be expected outside “careland” e.g. wanting to get up in time to meet commitments, to go to the toilet
  2. For “being unreasonable” as a very understandable reaction to the situation they find themselves in – common example: residents wanting the toilet several times an hour as it’s the only way to get attention or stimulation; residents “playing up” to get a reaction out of boredom or frustration, “challenging behaviour”
  3. For “being unreasonable” / manipulative, as the only way to regain some control in this very disempowering situation e.g. raising the stakes / threatening complaints to the Regulator  so that I can have a shower on Christmas day!
  4. Because they are unreasonable wankers. You get them in all sections of society.
(By the way, in case you were wondering, I think like most people I’ve been every one of the above at various points, though I’d like to think the first is the most common! Some tend to one of the reasons more than others…)

Scrabbling for resources

What particularly gets me about this situation is that residents are routinely blamed and labelled as “unfair” for daring to use scant resources that other residents need. It is very rare the scarcity of such resources (esp. staff time!) or the management responsible are identified as the culprit!

The illustrious home in which I live (far better than most…) charges £1,000 per week for me to live here. This is based on a costing model assuming I need over 40 hours of care (I use the word advisedly) per week. Anybody who knows me would know that’s ludicrous, I’m fiercely independent and don’t need anything like as much support as they charge for. Yet if I (somehow) were to receive all the care hours paid for, the following would happen:

  • The home would cease to function as a viable unit. Particularly if all the other residents were to get the care they paid for! The total would be several times the actual staff hours employed.
  • I would be accused, once again, of being unreasonable, demanding, and unfair on the other residents.

It does lead reasonable people (and the Council, who are doing an enquiry!) to wonder what, precisely, us residents get for the money.

 

J’accuse!

Given the above, it sticks in my craw that over the years staff and management have accused me many times of being unreasonable, to other service users’ detriment, including:

  • being responsible for another resident attempting suicide through jealousy of the staff attention I receive
  • intimidating and making staff scared of me and my complaints, such that they jump me up the queue above other, less articulate / empowered residents
  • unreasonably disrupting handover and jumping getting-up queues so that I could be up in time to meet voluntary commitments
  • putting my need for the toilet above their need to complete paperwork
  • wanting a bath on another resident’s bath day on returning from a week’s camping.

I could give hundreds of such examples.

I don’t generally think this is the front line care staff’s fault.  In most cases, I find that they are a hard-working, caring lot, doing their best for people whilst working in difficult circumstances, with inadequate facilities / resources / time / staff, huge responsibility, unsociable hours, poor pay and very little recognition. It’s no wonder things occasionally snap.

 

It’s all different in Care Land

But why, in care land, is staff’s inability to meet every residents’ wants or needs reinterpreted by staff (some) and management (some / many) as residents being unreasonably demanding and unfair to other residents? In many other high-paying service industries the Customer is king and customer services would be shocked at any such suggestion being made.

Imagine staying in a hotel charging £1,000 a week. A chambermaid accuses you of being unreasonable and unfair for having a lie-in, delaying her and affecting other residents’ room cleaning services! Reasonable people (and faceless sales droids) might rightly complain at such treatment and perhaps suggest there aren’t enough staff to do the job in a more “reasonable”, customer focussed fashion.

 

Sod that!

Next time staff accuse me of being “unreasonable” or selfish for wanting assistance I may suggest they are being unreasonable by not providing what I’m paying for. In other words, they should take their blaming emotional blackmail and put it where the sun doesn’t shine.

But given the impossible situation the staff are in, I would be being unreasonable…


With grateful thanks as always to Crippen / Dave Lupton Cartoons: www.crippencartoons.co.uk for his wonderful cartoon!

Jun 152011
 

Dont Assume things about me just cos I live in Care!

Living in a residential home, it’s sometimes difficult to work out quite what “role” I take, particularly in other people’s eyes.

There are various technical difficulties with living in a building registered as a “business”. For example, the Council won’t collect bulky rubbish, and I have previously had difficulty getting some things supplied or delivered (e.g. broadband) as they only supply “residential properties”. The fact that I live here doesn’t always work in a “computer says no” situation.

Perhaps more worrying is the assumptions others make about me because I live in a residential care home. Both the home and I have contacted various organisations to tell them that I deal with my own affairs and have my own phone line – but still, I have yet to persuade the NHS wheelchair repair people and the District Nurses to speak to me direct! They phone the home, assuming the Home run all my affairs.

Some tradespeople assume it’s OK to turn up at their convenience and without notice; over the years, particular failures of this type have been perpetrated by lift service people (cutting it off at no notice) and hoist repair people amongst others. (Though I’m also cognisant that this happens elsewhere!) They seem to assume that as the home is “manned” 24 hours a day it doesn’t matter when they turn up.

Then there was the time the home registered everybody – including me – for a postal vote without asking the residents. I’d rather go to the polling station.

 

“Charitising” fee-paying residents

Whilst frustrating and inconvenient, the above are simply a symptom of a worse disease: assumptions made about people living in homes. I find it most vexing. It’s one level on from the assumptions all disabled people face. I also have to continually fight internalising these assumptions.

Like many homes, particuarly homes for “younger” adults (under 65), the one I’m in claims to encourage personalisation, independence and normalisation; to work against segregation and preconceived ideas about disabled people.

So why is it that there’s a fayre advertised at the home for Saturday, to raise money for a new minibus.? There are huge signs around the town advertising it to all and sundry for the public to come. To me, this fair is about as welcome and appropriate as the proverbial fart in a spacesuit.

I object to the public being invited into my home, my personal space. A few years ago at the fair, I decided to go to bed for the afternoon; but random public opened my bedroom door and wandered in!

I also object to the perception of me and other residents as charity cases. I know my fees are over £1,000 per week to live here. On top of that, we pay 60p per mile for transport in the minibus with a volunteer driver. And that’s just the beginning of my financial objections in this area; let alone the more moral and personal objections.


Sod off, Father Christmas!

It’s nearly as bad as some bloke in a red uniform coming over on Christmas Day, dancing in our living room and giving out shortbread as his self-serving patronising gift to the Tiny Tims. If I’m at home, I hide in my bedroom until he’s gone. It’s not pretty; a 33 year old bloke hiding in his bedroom to avoid Father Christmas.

That’s organised by the well-meaning but misdirected local Lions group. The rest of the year, when we need people to assist residents to get out and about, we don’t see them. It’s pretty stuffed up really.

 

We Live Here

Next time there’s a debate about what to call usservice users, customerscharity recipients – how about normalising us and calling us residents? You never know it might just start to sink in.

Though I doubt it.

With thanks as always to Dave Lupton / Crippen for his most excellent cartoon. Image courtesy of Crippen / Dave Lupton Cartoons: www crippencartoons.co.uk