Leading charities slam ‘cruel’ back to work 

tests for terminally ill cancer patients 

07-12-2009 

 

Terminally ill cancer patients, and people undergoing chemotherapy, are being threatened with 

benefit cuts if they do not attend back-to-work interviews, warn leading charities, Macmillan Cancer 

Support and Citizens Advice. 

 

A new report by the two charities has found the Employment and Support Allowance (ESA) process, 

introduced last October to encourage ‘job ready’ people to return to work, is failing seriously ill and 

disabled people, despite assurances from the government that they would be safeguarded from the 

system. 

Findings from the report, Failed by the system, show: 

Terminally ill cancer patients, and people receiving non-oral chemotherapy, are being required to 

undergo medical examinations and attend work-focused interviews, when they should be 

automatically exempt from both. 

People undergoing, or recovering from radiotherapy and inpatients are being refused ESA when 

they should automatically qualify for the benefit. 

Cancer patients suffering from the long-term effects of cancer or cancer treatment are failing the 

medical assessment and being refused ESA. 

 

Patricia Watson from London was on a career break and about to start a new job when she was 

diagnosed with terminal bowel cancer. She says: 

 

“I was so shocked when I received a letter asking me to go to an assessment centre during my 

third cycle of chemotherapy. I was told that if I didn’t attend the interview my benefits would be 

stopped. No one was thinking about my condition or applying any common sense, I just felt part 

of a conveyor belt system.” 

 

According to the report, poor knowledge of ESA rules among Jobcentre Plus and DWP medical staff, 

inadequate administration systems and a lack of understanding about cancer and the effects of 

treatment, is resulting in ESA claims being incorrectly handled. Some terminally ill people are dying 

before they get the financial support they needed. 

 

Since April 2008, Citizens Advice Bureaux in England and Wales have dealt with over 85,000 

enquiries about ESA and Macmillan’s benefits helpline has taken over 600 calls about the benefit 

since May this year. 

 

Mike Hobday, Head of Campaigns at Macmillan Cancer Support, says: 

“It’s cruel and completely unacceptable that people who are terminally ill or going through 

gruelling treatment are being made to jump through hoops to get money they should receive 

automatically. The safeguards to protect cancer patients clearly aren’t working, and the ESA 

system is riddled with problems. The DWP must address these issues without delay to make sure 

people living with cancer are spared unnecessary distress and financial hardship.” 

 

Lizzie Iron, Head of Welfare Policy at Citizens Advice, says: 

“Citizens Advice Bureaux are reporting significant evidence of a range of problems with delivery of 

the ESA system which are causing real hardship to the most vulnerable when things go wrong. 

People claiming ESA are frequently seriously ill with urgent needs. It is important that the claiming 

process works smoothly so that people do not get stuck in the system or are unable to get 

through on the phone. DWP and Jobcentre Plus must rectify these problems quickly and put more 

safeguards in place so people do not continue to suffer.”

 

Citizens Advice also publishes the first of a series of papers on ESA today. Limited capability sets out 

concerns that the number CAB enquiries relating to poor administration of the new benefit is higher 

than expected, and that there has been an accompanying sharp increase in CAB qualitative evidence 

on these issues. 

 

To read the reports, visit macmillan.org.uk/failedbythesystem 

{http://macmillan.org.uk/failedbythesystem} or www.citizensadvice.org.uk 

{http://www.citizensadvice.org.uk} 

Note: 

The report is based on case reports from Macmillan and Citizens Advice benefits advisers helping 

people living with cancer claim ESA. 

ESA was introduced in October 2008 to replace Incapacity Benefit and Income Support. 

To claim ESA, people have to take part in a ‘work capability assessment’ during an initial 13- 

week assessment period. This may include completing a questionnaire and/or going to a medical 

assessment. People deemed to have a limited capacity to work, are placed in a ‘support’ group 

and do not have to undertake work-related activity. If they are found to be able to work, they are 

placed in a ‘work-related activity’ group and have to attend work focused interviews. 

The work capability assessment primarily determines whether the claimant is entitled to ESA. The 

test contains a series of questions, called "descriptors", that relate to physical and mental 

functions, and from which claimants score points. It focuses on specific physical functions, such 

as reaching, bending and continence.  A claimant must score 15 points to be deemed to have 

limited capacity for work. 

During the 13 week assessment period, claimants are paid up to £50.95 if they are under 25 and 

up to £64.30 if they are 25 or over. After this period, those in the work-related activity group are 

paid up to £89.90 and those in the support group are paid up to £95.15. If someone isn’t eligible 

for ESA they can claim Jobseeker’s allowance. 

Macmillan and Citizens Advice are recommending: Jobcentre Plus ensure contact staff and 

advisers are fully trained and aware of the ESA rules; 

An independent review of the work capability assessment to determine if it is effectively capturing 

the problems and disabilities faced by people with cancer; Jobcentre and ATOS medical 

assessors are equipped to ask claimants the right questions to gather accurate and substantial 

evidence about their cancer treatment so that they are correctly assessed for ESA;Macmillan 

Cancer Support funds positions in 68 Citizens Advice Bureaux to provide a specialist service to 

people affected by cancer. 

People needing help with their ESA application can speak to a Macmillan benefits adviser on 

0808 808 00 00 or find a local Citizens Advice service at www.citizensadvice.org.uk. 

{http://www.citizensadvice.org.uk.} 

Citizens Advice is publishing further papers on ESA which will look at problems with the work 

capability assessment, decision-making and appeals and the use of sanctions in the ESA 

process. 

Approximately one in five people living after cancer treatment develop significant long-term 

emotional, psychological and physical problems that seriously affect their quality of life (e.g. 

depression, incontinence, psychosexual problems, heart disease, new cancers). 

Approximately 90,000 people of working age are diagnosed with cancer each year in the UK, 

according to the Department of Health’s Cancer Reform Strategy, Dec 2007. 

There are 774,000 people of working age in the UK who have had a cancer diagnosis according 

to King’s College London and Macmillan’s Cancer prevalence in the UK, 2008. 

Notes to editors: 

1. The Citizens Advice service is a network of independent charities that helps people 

resolve their money, legal and other problems by providing information and advice and by

influencing policymakers. For more information in England and Wales 

www.citizensadvice.org.uk {index.htm} 

2. The advice provided by the Citizens Advice service is free, independent, confidential, and 

impartial, and available to everyone regardless of race, gender, disability, sexual 

orientation, religion, age or nationality. 

3. Most Citizens Advice service staff are trained volunteers, working at over 3,300 locations 

across England and Wales. 

4. Advice and information www.adviceguide.org.uk 

5. Volunteer hotline 08451 264264 (local rate) 

6. Citizens Advice Guide to your rights, second edition: January 2008 - over 600 pages of 

practical, independent CAB advice. An invaluable resource for any bookshelf - available 

from all good bookshops; price £11.99; ISBN: 9780141034089 

7. Follow Citizens Advice on Twitter: twitter.com/CitizensAdvice 

{http://twitter.com/CitizensAdvice} 

8. Subscribe to Citizens Advice press releases via RSS news feed: 

www.citizensadvice.org.uk/pressoffice {index/pressoffice.htm} 

 

Citizens Advice is an operating name of the National Association of Citizens Advice Bureaux. 

Charity registration number 279057, 

VAT number 726 0202 76, 

Company limited by guarantee. 

Registered number 1436945 England, 

Registered office: 

Myddelton House, 115-123 Pentonville Road, 

London N1 9LZ

Over the last week I have been corresponding with Chris Morley, Policy and Publications Coordinator of George House Trust (http://www.ght.org.uk).

One of the issues discussed is the "fear" some people with HIV have approaching non-hiv organisations for help, notably the Citizens Advice Bureau (CAB).

Chris, who has many years experience of the CAB and HIV sector has kindly written a guide on this and allowed me to publish this for us. Please read it as it may well put some of those "fears" into a better perspective.

George House Trust supports people with HIV in the North West and is based in Manchester. Anyone who reads NAM updates will note that they are a regular contributor to this journal.

Our thanks to Chris & George House Trust for this advice below.

John.

From Email -

 

"Citizens Advice Bureau and the fear of the unknown 

The fear or worry that you will be judged, blamed, or otherwise stigmatised for having HIV if you use a Citizens Advice Bureau (CAB) is mistaken - the CAB expects a lot of its advisers regarding equal opportunities, and treats everyone with respect. I worked for Stoke on Trent CAB for 12 years and explain here how CABs work and what you can expect. It explains why you really should try the CAB when you have a problem. The service is free, confidential, impartial, and accurate.   

 

Who advises? 

CAB don't accept everyone who applies to work as an adviser. It is like a proper job with professional standards even though most advisers are volunteers. These are answers to the two main questions about CAB volunteer advisers. 

5. Are there certain skills I need to be a CAB volunteer? 

 

All advisers receive comprehensive free training so do not need any previous qualifications, skills or experience. However, you will need to be open-minded, non-judgemental, be able to listen, learn, and work in a team. 

 

7. Do you provide training? 

 

All advisers receive comprehensive free training, which is recognised and respected throughout the country. 

 

The training programme consists of observation, working through self-study packs, and a five-day course run by Citizens Advice. You will be supported throughout your training by an in-bureau Guidance Tutor. Most bureaux have several trainees at any one time, so you are likely to be training with other new volunteers. We find that most people complete the adviser training programme in 6-12 months, although this will, of course, depend on how much time you can give to the training. http://www.nacab.org.uk/index/join-us/volunteering_faqs.htm 

 

 

The 5 day training course element mentioned above is always delivered by specialist trainers from CAB regional offices. A major chunk (3 days) of this training is on attitudes and equality issues. Often trainees find this really challenging. People are thrown together in a complete mix and work with people very different from themselves from across the whole region. It can really shake up people's attitudes and is often life changing for people. It was a privilege and very satisfying as a trainer to help people grow and develop like this. 

 

The trainers feedback to the local bureau any concerns or training needs of particular volunteers. The regional office is also on the panel that has to approve all volunteers before they may work alone (but always supervised / guided by an experienced adviser). 

 

People aren't allowed to continue training with unsuitable attitudes and behaviour, nor if they don't meet advice quality standards. I've suggested many people find something else to do that suits them better and have dismissed some where necessary when I was employed as a CAB training manager. I looked for intelligence (not qualifications), practical literacy and numeracy, communication skills, commitment to equal opportunities, respectful, open attitudes, a passion for rights and social justice, team workers, and a willingness to learn and change.   

 

CAB are regularly and closely monitored on equalities as well as advice quality, by the regional office and national organisation. The diversity of the volunteer team and how well it represents its local community are important criteria. Bureau are very occasionally expelled or suspended from the service for breaking the rules, and others are given improvement plans. 

 

But this is rarely needed - the organisation's systems are designed to deliver equality and to help bureau keep improving. The team ethos in the whole organisation helps keep bureau on their toes - they watch what each other is doing - learning better ways of working but also using subtle peer pressure to keep to CAB values and good practice. 

 

 

 

In the CAB 

CAB have lots of posters up about equalities, its core values including confidentiality; there is also a CAB HIV poster, and warnings about unacceptable behaviour. This should help people have the confidence they may need. There is a sound complaints procedure and regional offices and the national organisation always take complaints on equalities / respect issues very seriously. The complaints policy is also a poster you will see on display. 

  

While no organisation can ever claim that all its staff are always perfect, (I know I have the occasional "off" day), I am confident about strongly encouraging people living with HIV to at least try the CAB once. Most people are pleasantly surprised and very pleased with the service. Confidentiality is drummed into CAB advisers until it becomes second nature. 

 

 

Stigma 

I say to people that stigma comes in two halves and from two directions. 

1 What people think of us; and 

2 How we think of ourselves. 

This is true about any people marginalised because of sexuality, ethnicity, gender, disability, HIV, etc. 

 

Half the stigma problem is people expecting the worst for themselves and not expecting that things will be fine: we sometimes stigmatise ourselves. This is internalised stigma (shame about HIV, how I came to have HIV, my sexuality, my education / class, .... ). 

It is not our fault we feel like this / do this to ourselves - it was drummed into us by hard knocks in the past and how we may have seen others mistreated. 

It leads us sometimes to do more harm to ourselves than good because we expect the worst and so reject the help we need. 

 

 

The other half of the stigma problem is the stigma that comes from others. My experience is that people won't find stigma from CAB advisers at their CAB. People should not assume it will happen and refuse to try CAB because they have this fear but no concrete evidence of actual bad CAB behaviour. 

 

If there was someone on the sidelines looking on, rejecting help when we need this looks just a bit silly and not very grownup. We can do better. We may need a hand, or to check things out first, and there's no shame in that. 

 

 

Make it easy on yourself 

Ask about other people's CAB experiences. 

 

You can always take a friend with you. 

 

Work out and face the reality of what you may lose by not going for advice (only £30 a week in benefits / tax credits / housing benefit / lopped off your monthly debt repayments, is close to £1700 a year: imagine what a difference that might make to your quality of life). 

 

There are other ways of building your confidence in the CAB service - ring the local CAB advice line (you don't need to give name and address but will be asked - it's a funding thing / you could fake details) and try them out with a HIV advice-type of question. Judge that bureau by the response. Try another CAB if you're unhappy - each bureau or group of bureaus (eg in a city) is a separate charity and some are better than others. 

Some CAB offer appointments for more complex problems - see if you can book one of those. 

 

Some bureau do advice by letter / email. 

 

Ring the office and sound them out about any recent HIV case experience: the worker may not have details at their fingertips but after twenty+ years of HIV there is hardly a bureau in the country that has not helped people with HIV. 

 

 

A marriage of what you know and their expert skills 

Be realistic - expect to know more detail about HIV than most advisers, but you are not asking them about HIV, you are asking about benefits / money problems / housing / employment / whatever. They can answer questions about HIV but would need to use the CAB information system, the same as when dealing with any other problem. Advisers are trained to check and look things up and get it right. 

 

Like most people advisers don't know the ins and outs of every medical condition. Their training and job is to tease out from you any information that is relevant to your problem and the possible options for improving your situation, so they can fine-tune their advice to your unique situation / how they fill in the application form / prepare the review / appeal. They do this every day for people with every other sort of condition, some highly personal and stigmatised. 

 

They should agree with you what to say and how to say it, if they need to ring anyone or write anything for you. If you decide not to take any action, they will respect that. Of course you can change your mind later and come back. 

 

 

Confidentiality in practice 

CAB are like doctors surgeries or the hospital - the notes on your case can be seen by other staff on the team - advisers need to be able to check what the problem was, the agreed choice of actions and what the last worker did, when the person comes back for more help, just like doctors. Most bureaus are run off their feet - people don't have time to idly look for what's there. The bureau I worked at dealt with over 60,000 enquires a year, and over 20,000 people and we had no time at all to be nosy. 

 

 

In a small bureau in a small town, or where a neighbour or relative works, people understandably may have more concerns about their confidentiality. 

 

 

But people needn't worry about being seen in the waiting room, because all kinds of people go to CAB about anything and everything - no-one knows why you are there, even if they know who you are. You could be there to ask about returning something you bought in a shop. Their problem could be far more embarrassing to them than yours. 

 

 

Most people feel vulnerable and asking for help often feels like admitting personal failure. It is not. It's smart and grown-up to ask for help from experts when we are stuck. Advisers are there because they want to help, they like the challenge, they like success, they want justice for you. 

 

 

Advisers see far more of life than most ordinary people through dealing with hundreds of life's problems for people who come to CAB - and are not easily shocked, embarrassed, or surprised by whatever they hear. 

 

 

If by a fluke you know the adviser personally you are strongly encouraged to see another adviser at that CAB: you will be advised by someone you don't know. 

 

 

It is possible curiousity will win out and a CAB worker who knows you have been may check the files and discover what you asked advice about. They are however bound by professional confidentiality and the penalties for breaching this at CAB are very serious. Gossip in and outside the bureau about service users is not tolerated. No-one can rule out the possibility of a breach of confidentiality, but it is highly unlikely to happen. CAB are fiercely protective of their reputation for confidentiality. Keeping the public trust in its confidentiality is critical. 

 

 

I have major respect for CAB. When HIV first appeared in the early 80s, I was an ordinary bureau volunteer adviser. The whole organisation was struggling to get to grips even with racism - they had little to show for their anti-racism policy. By chance I was volunteering with the country's most radical bureau and I was soon involved in pioneering new, radical tactics, attitudes and professional standards. I applied to join a national advisory group of grassroots advisers and was upfront about wanting to help the organisation deal effectively with all equalities issues in its recruitment, training and the information it provided for advisers to use. I wanted to open up the service to many who needed it but were put off because it didn't seem to be a place for them - including lesbians and gay men. I was then one of a handful of openly gay advisers in the whole country. I was rather surprised to find I was pushing at an open door. CAB was open enough to making change happen that it put me on the advisory group and made it clear they recognised they were struggling with this and very much welcomed grassroots guidance on what was needed and what would work to change things. 

 

Very shortly after this, I used my position to strongly advocate that CAB face up to the issue of HIV - as a subject for advice, and because the stigma and fear CAB workers shared with most of the population just meant the service was not at all ready to deal with the questions which we were already being asked. At the time THT was only about a year old. CAB quickly said yes, and commissioned me to write the HIV advice/information pack, and I later helped them develop HIV training. 

 

For a large national mainstream non-gay voluntary sector organisation in the mid 80s this was bold and pioneering. Hardly any Social Service departments then were even thinking about the needs of people with HIV. They took a considerable risk because there was an "old guard" of rather conservative white middle class "do-gooder" volunteer advisers who were a significant part of the CAB at the time. The HIV pack caused some ructions in the CAB service but these were well managed. Within the next 10 years CAB made huge strides. 

 

It's an organisation with a strong passion for fighting for equality and everyone's rights - its work is 90% with people on the margins, mainly by poverty and other forms of exclusion and deprivation. It actively campaigns - here is a case concerning HIV and reforming the Social Fund that was used as evidence in a parliamentary briefing: 

A client visited the bureau to request help with a review for his application for a community care grant.  He was HIV positive, on Income Support and needed essential items for health reasons.  A request for review was made in August and at the end of October he still hadn’t heard.  The client’s state of health has been deteriorating because he has no money for essential items. http://www.citizensadvice.org.uk/index/campaigns/policy_campaign_publications/parliamentary_briefings/pb_benefitsandtaxcredits/reform_of_the_social_fund 

 

 

People with HIV are always entitled to feel safe, respected and welcomed everywhere and should be confident of finding this at their local CAB. 

 

 

If people living with HIV in the North West of England do have any problem regarding their treatment at a CAB because of HIV, I want to hear about it and we will do what we can to assist. If you live outside the North West of England, please contact your nearest HIV organisation and ask them for advice and help. 

 

 

Chris Morley, 

HIV Policy, Information and Publications, 

George House Trust, Manchester "