RITB Welfare Training June 2016 part 2

This is the second of three posts covering the training.

This first post is the background and purpose.

The second and third posts are by Alex Williams who has written about both days – both the experience and the information.

Account of the RITB Welfare Benefits training delivered by Tom Messere and Yvonne Bennett by RITB member Alex Williams.

Disclaimer: these are notes from the training days and don’t replace individual benefits advice and reading through the Big Book of Benefits and Mental Health.
Introductions

Fourteen participants attended both sessions on the 1st and 2nd June. All participants had before signing up to the training agreed to use the learning to benefit other survivors. One participant is going to support members of the hearing voices group which she facilitates on a weekly basis, while another learner plans to set up a free workshop. Other people taking part were in a position to support peers with their claim forms and accompany them at medicals. This training model can lead to the creation of a ripple effect lasting far beyond the two days. Participants can feedback to Maddog the ways in which they have assisted other claimants, whether that is an individual or multiple people with mental health issues who really need benefits advice, advocacy and representation.

“I learned so much, how to help someone else”

The first day served as an introduction to the welfare benefits system and made reference throughout to The Big Book of Benefits and Mental Health. This book is an amazing resource which was created by Tom’s late wife, Judy Stenger, and is now in its 16th edition. Tom updates the book on an annual basis and new content is co-authored by Yvonne.

Tom and Yvonne are welfare rights advisers and trainers with vast experience of assisting claimants and health professionals, doing all levels of benefits casework from completing forms to taking cases to Upper Tribunals.

The Big Book of Benefits and Mental Health
All of the 14 people taking part in the training were given a copy of The Big Book of Benefits and Mental Health and guided on how to dip in and out of this resource to find examples, suggestions, descriptors and case law.

“the Big Book of Benefits is going to be my bible”

The Big Book of Benefits and Mental Health may seem both welcoming and scary due to its scope and size at 411 pages. The book is a practical walk through the world of benefits and includes examples of claim forms as filled in by composite clients with different mental health issues. The written examples always help claimants and advisers filling in forms to tell their story when it fulfils descriptors and underlying legislation. The reader can find toolkits and explanations which aid their claim and its likely success. The book originally came from course notes from training done by Judy at Neath Mind about benefits and mental health. The first publication was made possible by lottery funding.

The first message of the day was that there is a huge amount of unclaimed benefits out there even though there are cuts to the budget for welfare benefits. Tom and Yvonne understand well that living on basic benefits is a struggle and the premiums/top ups gained from disability benefits can make the difference between someone living and existing.

“user friendly, dispelling the jargon, I liked the examples, and it helped me to think about the varied approaches one can take. I now feel more able, with less fear, to tackle these forms, BTW lunch was spot on”

Barriers

There are many barriers to claiming benefits when the individual has mental health problems. Examples of these barriers are the complicated nature of the benefits system, the online claim form, (Universal Credit is to all be done online), the need to keep appointments and deadlines and staff attitudes which may seem unsympathetic. Letters about benefit entitlement will sometimes not even make sense to experienced advisers! People with mental health issues may feel wary and exposed by giving out their personal details as part of an application. Some people may worry that revealing they are not coping within a claim form could lead to intervention from child protection or mental health social services, though the trainers confirmed that in practice this doesn’t happen since the content of claims is between the applicant and the DWP rather than shared with care agencies.

The government is placing more emphasis on claimant responsibility which doesn’t consider how the nature of anxiety may mean that some claimants can’t open their post or turn up to appointments on time. Applying for benefits relies on telephone or online channels which cause difficulties for people who struggle to communicate with the authorities. Several participants felt anxiety about being wrongly judged by medical assessors on the basis of their appearance when ‘high functioning’ , able to apply makeup or well dressed. The benefits system does make people ‘jump through hoops’ to get the benefits that they are entitled to often.

Questions about accessing benefits

There were many questions asked on the first day about benefits and dealing with the system. One participant asked whether the social fund still existed and it was explained that in England social welfare assistance had been devolved to local authorities. This localisation means that councils operate different schemes with varying levels of support, for instance in some places a referral to a foodbank is offered rather than financial assistance. Wales and Scotland still have Social Fund schemes; the one in Scotland is particularly successful and well promoted.

Another participant was concerned about whether a claimant could be forced onto Universal Credit. At present, Universal Credit applies only to straightforward jobseeking claims though a gradual roll out will take place over the next two – three years. Universal Credit was feared by some survivors due to any ongoing contact with the Jobcentre which may expect additional hours to be worked to reduce the amount of UC paid out. Tom explained that under UC everyone is a jobseeker until they reach full time work but then the claimant would need to agree with the Jobcentre where full time hours weren’t suitable due to health reasons.

Sanctions – an unnecessary ‘last resort’

The issue of sanctions was raised frequently as a social injustice and punitive measure against the vulnerable. It is now known that 49 claimants have died while subjected to sanctions.

Sanctions will still apply under UC due to its greater conditionality. Housing costs are still paid under a sanction with UC. There has been a disproportionate use of sanctions against claimants with mental health issues. Jobcentre offices deny the use of league tables and incentives for staff to sanction, but staff may have ‘personal improvement plans’ which review their own rates and question their performance. Tom and Yvonne would encourage any claimants affected by sanctions to challenge them since over 50% are reconsidered this way.

Several participants had been rejected for disability benefits in the past and had not been in a position to appeal the decisions. In the case of unclaimed benefits there is scope to request backdating. This backdating is for three months with ESA but can extend to up to 13 months dependent on the reason given for the claim not being made in time. While most sanctions are applied to those on JSA, people in the work related activity group of ESA are subject to sanctions.

Tom drew attention to pages 374 and 375 of the Big Book of Benefits which is a form created by welfare rights advisers in Greenwich. This form can be completed by the claimant and given to the DWP to make them aware of their mental health issues and a professional they wish to nominate as a contact. If the DWP apply a sanction they could be reminded of their ‘safeguarding procedures’ and where information about the claimant’s mental health is on file the sanction should be overturned. The form would also help in the case of people who don’t attend a medical. Anyone can complete the form as a way of making the DWP aware that they are vulnerable. A good time to submit the safeguarding form could be at the start of an ESA claim or during Jobcentre contacts for those in the WRAG.

“lots of information, opportunities to ask questions, patient and helpful trainers, nice venue”

Migrations from old to new benefits

Concerns were expressed by participants over the DLA to PIP migration and how people with mental health issues would fare. The trainers made clear that the government’s position is that DLA and PIP are different benefits, and what a claimant qualified for under DLA has no bearing on what they may get for PIP. With ESA the migration was different and claimants of older sickness benefits (Severe Disablement Allowance, Income Support, and Incapacity Benefit) had some transitional protection where they would have otherwise ended up with less money. With DLA to PIP, the DWP will not refer to old evidence/papers for DLA and it will be down to the claimant to make a fresh claim and submit relevant evidence. There will be claimants who are over 65 who are caught up in the DLA to PIP migration since they were not yet 65 in April 2013 when legislation came into effect. Participants and the trainers were aware of people who had been on both rates of DLA who lost the mobility component under PIP even if they did get an award for standard daily living component.

More people with significant mental health problems have needed to become involved in the ESA assessment process whereas they had been exempt under past sickness benefits rules. For instance, Incapacity Benefit reviews were not necessary for those on the highest rate of care in DLA or anyone with a severe mental illness. There are no exemptions for ESA and all claims are subject to regular review except for terminal illness which is a different benefits track.

One participant was concerned about someone she supports whose DLA has suddenly been suspended without reason. Other participants and the trainers suggested that this may be because she had been ‘invited’ to apply for PIP but had not done so. In these circumstances, DLA is stopped after four weeks of no contact from the claimant. The action to be taken would be to contact the DWP asking why DLA had been stopped. If the reason was a failure to apply for PIP then it should be explained that the letter had not been received. The DWP could then choose to reinstate DLA while the PIP application was done and a decision made.

The migration from older sickness benefits to ESA has taken longer than planned by the government. This process was meant to have been completed by April 2014 but there are still some remaining claimants on SDA who still have yet to transfer. The way that ATOS bought themselves out of the ESA assessment contract did affect reassessments of new and existing ESA claimants. Now that Maximus are operating this contract the regular assessment regime has restarted.

“the spoken expertise brought the subject to life”

Medical support

There was a discussion about health professionals and the way that their evidence may not act in favour of benefits claims. People with mental health issues labelled as having a ‘personality disorder’ may fear their medical notes suggesting they are ‘malingering.’ One participant recommended anyone diagnosed with PD make a request under the Freedom of Information Act to look at their notes. There was agreement that PD was not seen as a severe mental illness and many CMHTs did not offer regular contact as they deem these conditions to be ‘untreatable.’ The trainers explained that claimants should think carefully before submitting medical evidence and that there was no obligation for them to give the names of unhelpful health professionals or those who didn’t know them. It is possible to nominate other supporters eg a carer, friend or GP, as well as a CPN or psychiatrist.

Medical assessments

There was a lack of faith in the medical assessment process. Reference was made to the recent Dispatches channel 4 undercover filming which showed a judgemental assessor who boasted of the money he made from the job. Tom is going to meet with Capita to discuss the culture in the office shown on this programme. He asks for any negative experiences of medical assessments so that he can feed these back to the provider. Tom also stressed that there were some good assessors and reports to come out of them.

Steps to entitlement

The trainers explained the meaning of means tested benefits which are calculated on the basis of existing income and savings, creating a top up where these fell short of set levels. Student loans are counted as income as well as income from work earnings or savings interest. Examples of a means tested benefits are Council tax reduction scheme (which varies between local councils who administer this), Tax Credits (child tax credit and working tax credit) income based ESA and pension credit. UC will be entirely means tested.

Housing Benefit is the means tested benefit which covers part or all of a household’s rent. Local Housing Allowance is the term used to indicate the limit of what can be paid for a rent in the local area, this rate is determined by local councils. The ‘bedroom tax’ has hit a disproportionate number of disabled people who may be ‘under occupying’ their homes due to having more bedrooms than their recognised household need. Councils administer discretionary housing allowance which can be applied for where there is a shortfall in rent available through Housing Benefit and the actual rent, this is usually a temporary measure.

Contributory benefits require someone to have made National Insurance contributions in order to qualify. Examples of these benefits would be contributory based ESA (which is limited to one year when in the WRAG) and contributory based JSA. These benefits will sit outside of UC which rolls various means tested earnings replacement benefits and housing costs into a single monthly payment in arrears. Contributory benefits are often missed, and it was recommended by the trainers that claimants should ask the DWP to check their contribution record since the income based benefit is conditional on circumstances remaining the same. If a partner went out to work for 24 hours a week then the claimant’s eligibility for a benefit such as income related ESA would end unless they were on a contributory benefit.

Non means tested non contributory benefits include disability benefits. These benefits do not take account of income/savings or contribution record. DLA, Attendance Allowance and PIP are in this category. Some benefits such as ESA and JSA can be received on a contributory or means tested basis or as both. Child Benefit is also paid to those with earnings and savings, though there are rules affecting higher earners (ie £50,000 and above) and from 2017 there will be a cap on two children who can be claimed for where it’s a new claim.

There are also overlapping benefits where only one (that pays the most) is paid but the underlying entitlement can still lead to additional means tested benefits/premiums. An example is where someone may apply for Carers Allowance since they are providing more than 35 hours of care per week for someone in receipt of AA, PIP or DLA at the middle rate of care. If that person was receiving a state pension then the Carers Allowance would not be paid in cash but could lead to premiums within Pension Credit, Housing Benefit and Council Tax Reduction schemes.

Where someone does not qualify for an earnings replacement means-tested benefit since their partner is in work then they should still claim National Insurance credits only. This step will help to protect their National Insurance contribution record, which matters for future state pension entitlement.

Where DLA and PIP have increased the amount of means tested benefits that have been paid in the past, when the claim changes or is lost then there will be a reduction or loss of those additional top up benefits. It is important for the claimant to inform all departments of the authorities (DWP and council) which are paying their benefits otherwise this ‘change in circumstances’ could lead to an overpayment in benefit which the claimant would have to pay back.

Means tested benefits in some cases act as a passport to free prescriptions though there is a low income scheme exemption which can be applied for. Fines are made by the NHS Prescriptions /Business Services Authority if prescriptions are collected for free without the correct confirmed entitlement in place.

“The Big book of Benefits is an amazing resource and I now feel confident to utilise it fully”

Council Tax

There was a discussion about Council Tax. One participant was keen to raise awareness of the Severe Mental ‘Impairment’ exemption for council tax. This exemption is administered by local authorities and would require approval by a doctor. Someone with dementia or learning difficulties may qualify, but there are also cases where people with severe mental health issues of a psychotic nature could be entitled to this and council tax liability would be removed (information about this is on page 201 of The Big Book of Benefits and Mental Health).

In most local authorities claimants are required to make a contribution to their council tax with the reduction scheme only covering a proportion of the total liability. This change in the system due to the government’s ‘localisation’ agenda, has created inequity between councils. Policies are different from one local authority to the next so claimants’ charges depend on their address not the affordability or circumstances.

Changes

Another key message of the course was to tell any authorities paying benefits about changes. It is wrong to assume that the departments’ systems ‘talk’ to each other. Examples of changes to report would be:

  • A partner moving in
  • A change in benefits (see above)
  • A change in health condition where this would affect the claim.

Participants expressed fears that changing their address could trigger a benefits review/invitation to claim PIP. The trainers didn’t think this was the case since the roll out of PIP is being done for indefinite awards in a random way. The only people who may be able to know their approximate date of transfer would be where they have fixed term awards which are due to end before October 2017.

Working on sickness benefits

There was an interest in permitted work from participants together with a concern that doing any work would ‘prove’ they were fit to work. The trainers considered that permitted work could be done by those on ESA as a way of trying out whether working was a possibility. It would be important to remember that work done as a volunteer or for pay could be taken in account at the next medical. Working should be declared to the DWP before a claimant starts this. The trainers didn’t think that this declaration should necessarily trigger a review unless one was already due.

ESA refers to ‘limited capability for work’ or ‘work related activity’ but does not preclude someone working, especially if they are trying this as a route out of benefits. Advice should be sought on this area if the claimant needs help to weigh up this decision against any risk to longer-term entitlement.

Claimants can receive payment for working which is:

  • £20 for an unlimited time
  • £115.50 or less, up to 16 hours – if done for one year, or thereafter if done under supervision from a medical or employment adviser (supported permitted work). With this route it may be important for the professional completing the form to phrase work being therapeutic and part of a programme. The claimant would also need to explain how they could manage this limited work rather than more hours or duties.

There is a 12 week time limit for returning to ESA linked to a previous claim. After this 12 weeks the claimant would need to make a new claim, returning to the basic rate of ESA (£73.10 per week), often beyond the 13 week ‘assessment phase.’ Anyone who has left ESA to start work should be aware of this time limit especially if the job isn’t working out and health problems return in the workplace. It may be better in these circumstances to reclaim ESA than to do this later on.

Welfare reform

Disabled people are aware of the significant cuts to welfare as part of the government’s reform agenda. Benefits have been increased by CPI, a less generous measure than RPI since 2013. There is now a freeze on annual increases to benefits which in real terms is a 5% cut to incomes. The government has imposed a benefits cap which mostly hits those with families. There is a housing crisis and while the government claims that Housing Benefit is out of control there is an underlying lack of affordable housing provision. While the government did a ‘U-turn’ on the proposed cuts to Working Tax Credits, those same claimants will suffer a drop in income when they eventually migrate to UC. Disabled workers will experience less generous support from UC than Working Tax Credit. New ESA claimants in the WRAG will not receive any more than JSA from next year, a loss of £29.05 per week.

Appeals against benefit decisions are only allowed after a ‘mandatory reconsideration’ which typically takes 4-5 weeks to determine.

Universal Credit – is it coming?

Universal Credit now exists in most areas, initially affecting jobseekers with simple claims. This is due to change with a ‘managed migration’ starting from 2018. Most people on ESA will experience a natural migration, transferring to UC as their circumstances change rather than being expected to apply for this sooner. Anyone who works will be eligible for UC on a means tested basis though will need to supply their earnings each month. The idea is that the HMRC system will receive ‘real time’ information from employers about salaries and tax, and that in time this will be communicated to DWP systems. Self-employed people will need to do an online declaration of monthly earnings.

ESA

The route to claiming ESA is to get a medical certificate from a GP confirming being unfit for work. There is a 13 week assessment period during which the claimant is paid for £73.10 per week. The claimant will be sent an ESA50 form (medical questionnaire) and in 93% of cases will be required to attend a face to face medical. The outcome of the ESA claim will be one of these three:

  1. Claimant has limited capability for work (goes into WRAG)
  2. Claimant has limited capability for work related activity (Support group)
  3. Claimant is fit for work.

Around one third of claimants are placed in the support group. Passing the ESA test to enter the WRAG depends on scoring 15 points. The ESA descriptors are on pages 64 and 65 of The Big Book of Benefits and Mental Health. On page 64 the descriptors 1-10 need to be met due to a physical health impairment rather than for mental health reasons. There are grey areas where mental health may result in physical symptoms in line with these descriptors.

“think about where difficulties can fit descriptors, often it’s not obvious”

For anyone completing the ESA50 they would need to emphasise how something may physically happen (e.g. IBS causes me to physically lose control of my bowels.’) Points gained in the physical health descriptors can be added to those in the mental health directed ones (11-17). The ESA50 contains boxes for the claimant to explain how problems affect them and it is advisable to give more details and examples relating to the descriptors. The questions on the ESA50 do not reference the actual descriptors so it is best to cross check these and to amend the form if necessary to give additional information.

Medical evidence can be sent in with the ESA50 and may mean that the claimant isn’t called for a medical assessment .

There was a question about descriptor 10 over altered consciousness. This descriptor tends to apply to those who have diabetic hypoglycaemic episodes or seizures. In the mental health descriptors there would be scope to refer to dissociation or self harm (12 awareness of everyday hazards; 14 coping with change; 15 getting about).

The trainers explained that there are regulations 29 and 35 about exceptional circumstances. If there is a ‘substantial risk to mental health or physical health if not so treated’ as having limited capability for work related activity then this could be argued as part of a challenge to a decision. There is information in The Big Book of Benefits and Mental Health about using these regulations to protect someone at risk of relapse if put through being found fit for work or fit for work related activity (see page 115).

This is the end of the account for Day 1 – you’ll find out about Day 2 here. LINK

 

RITB Welfare Training June 2016 part 1

This is the first of three posts covering the Welfare Rights training we crowdfunded.

This first post is about why we ran it.

The second and third posts are by Alex Williams who has written about both days – both the experience and the information.

Why did we run this 2 day training course?
Because the odds are stacked against benefits claimants, in particular those with mental health problems. The DWP have £22 million to represent themselves in Personal Independent Payments (PIP) and Employment and Support Allowance (ESA) tribunals (source: Benefits and Work) but since 2013, people challenging benefit decisions are no longer allowed to get legal aid. This saved the Ministry of Justice – wait for it – £22 million. (source: CPAG)

On our Facebook group and in our personal lives, we keep hearing how stressful applying for ESA and PIP is and how hard it is to get support and good advice.

“weapons grade evidence is crucial”

The Work Capability Assessment for ESA is directly discriminatory and biased against mental health claimants and the Work Related Activity (WRAG) of ESA is going to be reduced to the same level as Job Seekers Allowance (JSA).

The impact of assessments are having a negative impact on our mental health – an article in the Journal of Epidemiology and Community Health in November 2015 links WCA tests for ESA with possible additional 590 suicides, increased mental health problems and hundreds of thousands of antidepressant prescriptions. This is all due to the pressure of receiving the forms, how difficult they are to fill in, the prospect of an assessment, and what is at stake i.e. losing the ability to live practically or work. (PIP is not means tested and can be claimed by disabled people in employment.)

The critieria ESA and PIP are more focused on more physical impairments and learning disabilities and this makes it more difficult for people with mental health problems to successfully claim.

Many people have been discharged from secondary mental health services because of cuts despite ongoing or enduring needs, and they cannot always access medical evidence from their former service.

GP’s may not be familiar with their difficulties and needs, and some surgeries charge fees for a letter to accompany a form, or won’t write it anything till the claim is in appeal. GP’s (and mental health professionals) need to understand that a succinct letter accompanying a form could help to prevent weeks/months of loss of income and having to go through a tribunal. It helps with ESA claims if professional supporters can make it clear that their patient is not fit for assessment, attendance at a JCP for training, work placements or employment, and to outline why and what risks this presents. Many do not know that they can do this.

So with critieria not designed for mental health problems and the difficulties in getting useful medical information from secondary or primary care, people with mental health problems are really up against it. At the same time, advice services are being cut.

That’s why we decided to run this training. We hope to encourage and inspire other groups to do similar things.

The training 

We wanted to equip ex/current mental health service users (all with previous/current experience of being a claimant) with the skills to: teach others how to fill in forms and gather evidence and to fill in or review forms with people online, by phone, or face to face, or accompany to assessments.

Often people with mental health problems feel more comfortable taking support from fellow survivors who understand the specific discrimination inherent within these processes.

14 people from RITB and across the UK attended our two day training course focusing on ESA and PIP.

“first public group situation I haven’t left in first couple of hours and didn’t feel completely out of place”

We asked everyone to pledge to pass on their skills – to learn and ‘pass the parcel’, so that 14 people with knowledge became 28 and so on, a ‘ripple out’ cascade effect of teaching and peer support.

RITB are very grateful to the following:

“there are people who actually care”

  • Everyone who donated money to make this happen
  • MHRN for use of their bank account
  • Rethink who offered us hospitality and a free room for both days
  • Our trainer Tom Messere and co-trainer Yvonne, author of The Big Book of Benefits 
  • RITB member Alex Williams for taking amazingly comprehensive notes
  • Everyone for taking part
  • And the biggest thanks to Maddog who was both driving force and organiser extraordinaire for this training:

It was personally a pleasure to organise and see people come together in solidarity and share a lot themselves, to put some faces to names and we had some lighter moments along the way too, with the occasional bark. Maddog

 

Can we recover? What does the word recover mean?

I am going to do a Recovery In the Bin rodeo and take on one of our sacred cows, and deal with a straw man.

Can we recover? What does the word recover mean? Get back what is lost? In that sense I am going to say that as such, I don’t think we can! We cannot recover (what has been lost)! Our lives have passed over too much time, unless we are talking and even then only possibly, first episode crises.

We can get better, whatever that means, I will leave that there for now, the word ‘better’ IS open for interpretation BUT not this comment.

We do other things, we resolve stuff, we tease out memories, we re-write our own narratives, we recode them, we untie knots, we tie other ones, we unbind, we give ourselves agency and self-determination towards greater autonomy, but it is a left wing and/ or liberal at the most right wing BECAUSE there is no autonomy without others having theirs too. At least a Isaiah Berlin negative freedom, with an honest positive freedom, just not an enforced negative freedom on others behind the hidden positive freedom lie. We become, and are always becoming ourselves, shedding old selves as we go, reforming and reconfigurating our relationships with ourselves and others, navigating both the physical terrain, but also the mediated social environment and the economy.

  • Alastair Kemp (Co-Founder of RITB)

Yippee!

Hurrah! We did it! THANK YOU to everyone who contributed to our appeal to raise funds to train 16 volunteers to support people who experience mental distress, before and up to ESA/ PIP tribunals.

We have reached our target of £2250 so we can pay for the trainer, Tom Messere, to travel to London to do the training, provide lunch, and contribute to participants’ travel expenses.

We are also planning a follow on training on appeals/tribunals after June with another trainer Paul Treloar who has kindly offered us a days training.

And at least one participant has committed to train others where they live so the training can be spread far and wide.

The appeal is open until Friday 29 April so you still have time to contribute so we can fund the follow on training.

BACKGROUND

The DWP have £22 million to represent themselves in Personal Independent Payments (PIP) and Employment and Support Allowance (ESA) tribunals (Benefits and Work). Since 2013, people challenging benefit decisions are no longer allowed to get legal aid. This saved the Ministry of Justice – wait for it – £22 million. (CPAG)

In the meantime, disabled people have been struggling to claim the benefits they are entitled to and many have to appeal the DWP decisions – over half the ESA appeals succeed.  However, there isn’t enough support for people throughout the process of claiming because Citizens Advice Bureaux and other advice services are overwhelmed by the demand.

People with mental health problems are at a particular disadvantage when claiming PIP and ESA. The criteria are framed in terms of physical impairment and the impact of assessments are having a negative impact on our mental health – an article in the Journal of Epidemiology and Community Health in November 2015 links WCA tests for ESA with possible additional 590 suicides, increased mental health problems and hundreds of thousands of antidepressant prescriptions.

Jobs

The following blog post on Critical Mental Health Nurses’ Network has been contributed by Jonathan Gadsby.

This week in the Guardian newspaper published an opinion piece by columnist George Monbiot on the subject of neoliberalism. Those interested in critical ideas about mental health will have noticed that it is a word which gets mentioned increasingly. Before Monbiot’s piece, I would have recommended David Harvey’s introductory book (see below), but Monbiot hits the major themes in just a few thousand words.

You look fine… you don’t need help!

WOMEN’S EXPERIENCE IN THE PSYCHIATRIC SERVICES – APPEARANCE AND ARTICULACY

Following a few comments on our Facebook Group, about how some of us were lounging about in our PJs on a Sunday afternoon, a discussion about how women’s appearance and behaviour can affect how we are seen and treated in the mental health system. Joanna said there was potential for a conference and research on the issue of women’s appearance in Mental Health services as it impacts on diagnosis, assessment of needs and risk.
So we decided to start with a blog post based on a couple of discussions in the Facebook group.

HOW WE LOOK

Joanna: ‘Dishevelled/smelly (I currently qualify) required for SZC/psychosis. [Joanna is currently waiting for a plumber to fix the water supply in her flat!]. Medical student told me that during her MH placement a psychiatrist said he knew if a woman had BPD “just by looking at her” and he referred to “too much eyeliner” or skirts being “too short”.

Joanna: Some women have been refused help because they looked ‘too smart’

AE: Many women I know need to dress well when feeling bad and put on make up in order to get the strength to leave the house at all. Like putting on a costume and mask to hide behind when in public.

Joanna: for some women putting on reasonable clothes, looking clean, bit of makeup has nothing to do with ‘care’ or function even. It can be as you say the only way to face the outside world. It can also be a protection because looking dishevelled actually draws attention. It might also be the only thing a woman feels able to do for herself taking a lot of effort

Michelle B: make-up has had the thumbs up that I am well enough if I am wearing make-up — this is a sexist thing make-up hair die and so on, clothes yes angry if in red yellow or other colours

Victoria: I will never forget a comment from a nurse when I was 17 – 17-“”you silly girl, you’re pretty, there’s no need to hurt yourself”….?!?!?!?

Anon: When I was 17, my first hospitalisation… From a nurse, “but you look like a model! You shouldn’t be in here…”

Deborah: The first time I saw my psychiatrist he said in front of the ward round that I was ‘an extremely attractive young woman” and then seemed to use it to negate my description of how bad I was feeling. Sadly from then on because I hated being called that and for fear of not being believed I looked after myself less and less, doubled in weight, barely washed by hair and only wore black. At least 15 years later (after I had moved 100 miles away, still had a couple of appointments with him a year but didn’t feel under constant scrutiny) I dared to wear something brighter and put on some lipstick. And yes, you’ve guessed it, he immediately said how much better I was!

Katy: I asked my friend to buy me prison-style garb last time I was in hospital coz I was being treated like a criminal offender or a thug…a nurse in the PICU braided my hair to complete the look smile emoticon

Lydia: In my craziest days I used to test out the system. If family claimed I was ill and I had to be assessed I used to wear something slightly outrageous and it would always be picked up on by a psychiatrist. (Shows I WAS off my head to risk that). I can’t tell you the number of times my appearance has been commented on in nursing reports though, and I have spent hours changing trying to decide what to wear to give a psychiatrist or social worker the right impression e.g. not red — he already thinks I’m angry. And that’s too bright = high. Lawd what a pain!

Joanna: Assumptions are made about women who self-harm in relation to their appearance and mental state. For example, “what’s a pretty girl like you doing this for?”, and “you’ve defaced yourself”

Joanna: Through to accusations of “flaunting” of the body if any scar is visible

Joanna: Weight and assumptions. It’s always assumed that any woman with an above “normal BMI” through to “morbid obesity” has a “good appetite”. I have seen friends in hospital going doolally through lack if nutrition but staff ignoring because of their weight & assumptions. Conversely, thin women harassed endlessly about eating.

Tincey: From ignoring weight as a factor to not understanding metabolism and stress, policing the body seems to occur (at least for women, can’t speak for men) across the board in medical or other services, along with moral judgement. I was seriously ill and having a lecture on being overweight, not taking into account the various factors involved (so common to have issues in PTSD and CPTSD). So many services still espouse the idea that it’s calories in/calories out and that it’s down to our beloved ‘lifestyle choice’ so lectures along the lines of everything will be fine if you stop being a pig — miracle cure.

Joanna: Not eating, weight loss, dishevelled is the correct appearance for women SUs

Sue: I rarely leave the house without full make up /extra defence mechanism/protective layer which apparently means all is OK. And I agree with the BMI thing-still not malnourished looking enough for help apparently and if I try to lose more weight to tick their anorexia boxes I’m obviously acting out using BPD attention seeking tactics.

Liz: My favourite thing I read about myself is that once in an appointment I “sat down very aggressively”

Liz: Oh I have long been told “clothing” part of my various pathologies, this is nothing new comrade……dark clothes all the same colour safer.

Lydia: I’ve always felt that my image doesn’t help. There’s some idea that I’m a quiet wallflower, which is clearly not the case, and the more I try to act in the way that’s expected the less I am me, but I’ve also tried being myself and it means a very long section. Compliance is the key.

We made the links between appearing smartly dressed and being perceived as articulate — professionals often mistake these as meaning the person is functioning and not in distress. Alternatively, articulacy can increase the risk of being diagnosed with BPD or confused with pressure of speech and hypomania.

ARTICULACY

Katy: My ‘articulacy’ was called hypomania…I told that shrink that I was not being hypomanic — it was my intelligence talking and if he could not keep up I’d talk more slowly for him !

Jane: Yeah I had pressure of speech because the psych reviews were less than 10 mins and he wouldn’t let me get a word in. So in 2 mins a week I was meant to cover everything.

My psyche has always commented on my being intelligent and articulate, and if quiet & less arsey would be more worried re mental state

Sandra: Also I think noting if had not bothered looking better dressed. GP frequently tells me her comments on my insight. Think can be misleading re how feeling

Sandra: Maybe we would all be shocked to see how we are perceived in notes by all profs

Joanna: “Insight” doesn’t = coping or not at risk. Every woman I’ve known who has died by suicide was intelligent & articulate & had “insight”. They just couldn’t get support.

Sandra: Yeah that the most scary when I have felt at real risk have been seen to be coping well.

Joanna: I’ve been considered suicidal when I haven’t & never been accurately ‘assessed’.

Sue: ”You’re obviously an intelligent woman-I don’t know why you can’t deal with your traumas in a more appropriate manner”
Joanna: Intelligence meaning that automatically means there’s no distress
Joanna: Why is this not said to Stephen Fry?
Sue: Because he’s rich and privileged
Joanna So only poorer intelligent people supposed to think their way out of distress
Sue: Yes and PD diagnosis = “at it”
Joanna: Intelligence = insight
Sue: Intelligence=insight=manipulation.

Anon: I can relate to this so much. One example I can give is phoning the (needless to say useless) CPN’s once when very distressed & suicidal, to be told “you’re an intelligent woman, you tell me: who’s in charge of your actions? Who’s in charge?” as if that would be “empowering” in some way…

Anon: Also being denied crisis care because I was “articulate” “intelligent” and “displayed good insight”… If you can describe your experiences of mentalness then you don’t need support. And if you can’t communicate them you don’t need support either, because “we’re not mind readers! ”

Anon: I came to the conclusion months ago that the only way to get support in a crisis is through actions, not words. Which obviously is incredibly risky. And “manipulative”

Sue: Being processed through the self harm team telling them I’m going to OD again without extra support and being told that’s my choice.

Sandra: Never ever be angry, because that is only behaviour of loons, don’t get angry with receptionists at CMHT who are asking bloody personal questions cos of course none of these ppl ever get angry fuck fuck

Joanna: Anger is particularly not acceptable from women & black men

Lydia: And swearing is not acceptable from “respectable” women which means I’m not. Maybe I need to clarify that with my psyche next time I see him.

Megan: I am struggling right now, asked several professionals for help and was told no as I was articulate. Spoke to Social Worker and Support Worker and they seen I was struggling and said it was completely wrong to judge my mental state on whether I am able to complete a sentence or not. AHHHH!

Michelle CM: My GP told me I was “intelligent enough” to grasp the concepts of therapy from a self help book so I didn’t need a referral anywhere.

Naomi: I have had issues with being too ‘open’ in that they thought it was part of my BPDness and I should be avoided…
Joanna: but if you had not been open you would have been failing to engage.

Jane: relating this to appearance/articulacy — for a woman even being polite but distant is not enough — you have to come across as ‘genuinely’ warm, respectful, deferential, of staff. Also sense that if you do behave positively/politely but staff don’t believe you share their views then you are regarded suspiciously as manipulating them somehow. I think this reflects something I once read somewhere — in psychiatry ‘compliance’ isn’t enough you have to be brainwashed too — employees/workers just need to be polite/do what they are told even if they don’t agree — psychiatric patients have to agree with what is done to them or they are asked to do — domination not just of the body but the psyche too

CONCLUSION

When women seek help from services, especially when in crisis, we are judged on what can be seen and rarely given the chance to explain our distress. Workers refuse to believe we can be as distressed as we are because we can look ok and we are not given the chance to explore what is really going on beneath the surface. We believe this is based on sexist and sanist assumptions and on the pressure on workers to refuse services to cut costs.

As Michelle said “people judge you by this idea of femininity rather than as a person”

——

These are excerpts from two long discussions – we have only included comments from the women who agreed to be included.
We have rearranged the order of the comments in places to make it read a bit more coherently.
The discussion also included some linked issues:

  1. sexual harassment and abuse within psychiatric services
  2. judgements on our sexuality – our sexual behaviour, relationship status and our sexual orientation
  3. the intersections between gender and race and class
  4. women’s experiences in forensic and criminal justice services

We think these deserve more discussion – look out for future blog posts on these topics.