Dear Fellow Health and Social Care Professionals
I have been asked to write something about being a useful ally to benefits claimants. I don’t think that there is anything we can do that is more important at this point in history, when attempted suicide rates for people on ESA have demonstrably doubled between 2007 and 2014 as a result of welfare changes. As I write, I have friends and claimants going through this process, subject to ‘compliance officer’ reviews and endless re-assessment. As many say, this is often more devastating, more life threatening than decades of psychiatric oppression and traumatic experiences such as abuse. If we do not call out the devastating effects of these policies on our friends and claimants, we are, as far as I am concerned, complicit. So, some tips.
First, er, ignore anything fellow professionals tell you! The knowledge on what is happening is held by disabled activists so connect with and offer yourself as an ally to national groups, such as Disabled People Against Cuts, Mental Health Resistance Network, Black Triangle, Recovery in the Bin and WinVisible. Sign up to newsletters, respond to government consultations, lobby your professional organizations, amplify tweets, go to local actions and connect with the people who KNOW.
Make sure you know which benefits do what, so that you can ensure claimants have access to the benefits they are entitled to, and ensure you understand the processes surrounding application, reassessment, appeal and so on. Find out about PIP and ESA, of course, including the difference between being in the support-group and work-related activity group, but also things like bus passes, carer support and prescription exemptions. Make sure you know when Universal Credit will be introduced in your area, if it hasn’t been already, and what that will mean for claimants. It is exhausting and frightening for claimants repeatedly to have to explain to professionals what is needed when.
It beggars belief that health teams have no training on benefits, given the demonstrable connection between being a claimant, poor mental (and physical) health and reduced life expectancy. Be the change we need to see by organizing team training with a real practical focus. Then write about it in your professional magazines to encourage others. Consider setting up support or information groups for claimants e.g. how to survive an ATOS assessment, what will happen when Universal Credit is introduced. Ensure that you and others in your team don’t farm claimants off to local organizations such as Citizens Advice Bureau. Yes, this can be super useful, and they will probably know more than you, BUT approaching new people can be impossibly anxiety-provoking when one is in agony. You are known, and of course many people will nod along to recommendations to go somewhere else, because it can feel shameful to admit this is difficult. I know I have done this many times in the past.
Think about how you can send out counter-narratives to the government propaganda that many people identify with and internalize (e.g. that people on benefits are ‘scroungers’, that benefits are a ‘lifestyle choice’ and that claimants only have ‘rights’ if they perform certain acts to fulfil their ‘responsibilities’). Explicitly and frequently acknowledge the brutality of the welfare system, and your disagreement with how claimants are treated. Ensure you do not ‘gaslight’ claimants by presuming that certain things are a symptom of illness rather than a reflection of reality. For example, claimants often ARE being recorded when they walk from the car park to the DWP assessors office, they ARE sometimes being monitored on Facebook. If claimants would find this useful, explicitly link internal distress with the sociopolitical DWP context in things like CPAs, psychological formulations and so on.
Think with claimants about how to respond to the triggering effects of benefits related things. How might they seek help? It is useful to put it down on a risk assessment, or even as a red alert on electronic notes, so workers from other teams, such as the Home Treatment Team, or Psychiatric Liaison, realize their gravity as triggers. Staff can be quite cut off, as we know, and sometimes need these kind of prompts to react with sufficient compassion and gravitas.
Think how can you as a professional, and your service, keep particular claimants’ trajectories re benefits in mind. For example, you might ensure that claimants receive a text when letters are sent out to ensure the sound of the postbox doesn’t trigger DWP anxiety. Or you might make a note in your calendar of key dates, like the date of an assessment meeting, so you can send a text in support in the morning if you cannot attend and check-in afterwards. These small acts of recognition matter. Beware of assuming that claimants are well-supported, and have someone to attend benefits meetings with them. The shame associated with benefits can make people, even prominent DWP activists, find it difficult to ask for assistance. Try to do this in a way that maintains the dignity of claimants as needing help can be a devastating blow to pride (we all, of course, need help at times).
With individual claimants, your overwhelming priority is to help with filling in forms, provide letters of support and work to ensure claimants are ‘awarded’ benefits and are exempt from face-to-face assessments. If time dictates that you need to choose between helping a claimant fill in a form and writing a letter of support, go for the latter. Without a good letter of support, a claimant has little chance of success – however severe their disability, however well filled out their form. Appealing later down the line can take up to 18 months.
Offer to be present when claimants fill in forms and allow at least 90 minutes in your diary so you can have 15 minutes before and after the form-filling to breathe out. Bring tea to form-filling sessions, and perhaps even biscuit, if the claimant does not have eating difficulties. Do anything that you can to acknowledge the stressful nature of dealing with the DWP. Claimants will likely be in a state of high alert, so it can also be useful to put a sign on your office door saying ‘do not disturb’. You might wish to offer to post the form for the claimant so that they can leave the office with it done.
It is incredibly important to have the descriptors for each question to hand, with the scoring points for each question. You can find these for ESA at the bottom of this letter. The descriptors are written in a way that is biased towards physical health problems, so you and the claimant need to think together beyond your first impressions to apply them to mental health. For example, dissociation and social anxiety may make it difficult to travel on public transport. Cognitive problems INCLUDE things like cognitive biases – e.g. all-or-nothing thinking – though the context of the form doesn’t imply that (this was made clear during RF’s case against the DWP in 2017). Ensure claimants approach thinking about each question from the vantage point of their worst days but acknowledge fluctuation.
Claimants needs to provide evidence for any activity they cannot do, to use the government’s own words, “reliably, repeatedly and safely”. This, in my experience, includes a lot more things than claimants initially think. If the claimant does voluntary work, ensure they explicitly write how this differs from paid work. For example, “because I am not paid, and I know they don’t rely on me, I can take time off, and don’t have to concentrate when my voices are bad, and I don’t feel crippling guilt. When I used to work, one of my voices attacked me for letting people down and this caused me to have a breakdown”.
Help claimants to acquire as many letters of support and supporting documents as possible. Include prescription forms from the GP if medications are not explicitly mentioned in consultant letters. Some GPs charge for letters of support. Costs like this can mean the difference between being able to eat and not for many claimants, in which case use your professional power to pressurise the GP to do it for free. In my experience, this normally works.
Filling in forms in the way the DWP requires, and providing useful letters of support, often means focusing on what is difficult and writing in a far more pathologising, medical model manner than you might normally. It must be deficits based, with diagnosis used as shorthand. If you are critically minded, speak with claimants first about the need to adopt what Recovery in the Bin Administrators calls ‘double speak’, i.e. writing in a way that you disagree with because that is best way to serve the interests of the claimant. Acknowledge this is shit, and ask permission to do so. I have always found claimants understand, are relieved, and say yes to this.
Start your letter of support by stating your qualifications and your relationship to the claimant, then mention if the claimant is not able to attend a face-to-face assessment (in which case note the severity and type of risk behind this – the DWP considers this to be ANY deterioration in mental health), then the diagnosis, symptoms, and descriptors. End the letter by stating you support the claim, and provide your contact details for any further questions. Be sure to add page numbers and put the claimants name and NI number on each page after the first one (which has their address and DoB).
Be careful not to mark your letter of support as ‘confidential’. The DWP takes this to mean it should not be directed to assessors, even if the letters is addressed to them! Yes, really. If your letter of support only covers mental health and the claimant also has physical disabilities, state this explicitly – acknowledging the other diagnoses if possible, and stating you will not be covering this in your letter.
Write your letter of support with the descriptors to hand, trying to get as high a score on each one as possible, and putting in bold words that tally with these criteria. Assessors do not care about your psychological formulation, the claimant’s history or the developmental and/or socio-political causes of their distress. Indeed, feedback suggests that empathic, long letters can be counterproductive as assessors do not read them, so frame your letter around the descriptors. It is not enough to say ‘x cannot learn to do y’. You need to explain and give examples. For example, ‘x’s ability to adapt to new situations is severely compromised by the intrusive nature of the voices she hears, which are considered to be a symptom of y’; or ‘y’s obsessive compulsive symptoms are so severe that ritualized behaviours take up the overwhelming majority of her day, meaning she is unable to cope with change’. You can find a super useful link on writing letters of support at the bottom of this letter.
As aforementioned, getting a paper assessment is crucial. This is because assessors are wont to ask questions like ‘So why haven’t you killed yourself yet,’ and assessments are nearly always traumatic with weeks/months of anxiety beforehand. Because this is so important, write a separate three or four-line letter stating how a face-to-face assessment would damage the claimant’s mental health (e.g. by increasing suicide risk). This is a life saver. Don’t justify your request by saying the claimant finds it difficult to leave home or they will offer the claimant a home visit!
Consider writing an additional three or four line letter if the claimant finds phone calls or emails difficult. The method by which the DWP contacts claimants can be seen as a ‘reasonable adjustment’ under the ‘Equalities Act’. This can ever so slightly decrease claimants’ sense that they can be intruded on at any minute.
If a benefits form has already been sent in, and the claimant receives an appointment letter, it is perfectly possible to get this paused and then stopped with a phone call and by faxing an ‘exceptional circumstances – further medical evidence’ form. Any health professional can make this request. For further details of how to do this, read WinVisible’s superb guide – a link is at the bottom of this letter.
After filling out forms, or sharing your letter of support with claimants, I suggest setting up another session as soon as possible to co-write a document celebrating what is unique and worth celebrating in the claimant — a ‘counter narrative’ to what the DWP has just made you both do. Try to make sure both the form-filling and counter-narrative sessions are supernumerary I.e. are not taken away from the number of sessions claimants are entitled to.
If the claimant ends up having a face-to-face assessment, ensure they know their rights which include the right to reasonable adjustments such as having an assessor of the same gender, being in a large room with a window if one gets claustrophobia and so on. It may be easier for you to call as this needs to be arranged in advance and calling the DWP is a zillion times more stressful if you are the claimant.
It is really important to get assessments recorded as the presence of the tape recorder means DWP assessors are more likely to be fair and polite (or it may come back at them). Claimants have the right to record assessments but only if they are double recorded i.e. if the assessors get a copy too. It is best to request this in advance, as some assessors have been known to refuse when put on the spot. Offer to attend too if you can.
If a decision is made about benefits which the claimant, or you, disagrees with it is important to request a mandatory reconsideration within a month. The claimant may be so drained by the whole process, or feel so unworthy, that they are reluctant to go through this again even if it means financial destitution. As a professional, it is important to be present enough, and supportive enough, to help people continue to get the benefits they need – without being a headfuck.
If claimants are being harassed by the DWP, for example being called when they are in hospital, a phone call can stop this. Whenever you call the DWP, have the claimant’s name, address and NI number to hand. Speak in an authoritative voice, mentioning your profession, and state the claimant is with you or, if not, why. If you are calling a named DWP assessor, and reach an answer machine, leave a message saying that you have another appointment in x amount of time but this is super important and could they call back urgently. This tends to work.
Claimants who get the benefits they need, or win appeals, are often subject to the whole process again within the year, or receive a call from the ‘compliance officer’ to check the legitimacy of their claim. It can feel never ending. Don’t underestimate the significance of giving time and space for the despair, anxiety and rage this process provokes. But, to bore you silly with my main point, NEVER PUT EMOTIONAL SUPPORT ABOVE PRACTICAL SUPPORT WHERE BENEFITS ARE CONCERNED.
When claimants are being discharged from your team, prepare a letter of support, ready to go when needed in future. Otherwise, you are effectively punishing claimants for doing better/being victim to NHS funding cuts. I know that is time consuming but even if you just do a couple of paragraphs, it can make all the difference. And, trust me, the more benefits support letters you do, the quicker it gets.
Showing solidarity matters. So, get active, respond to public consultations, attend protests, organize conferences, demand professional courses have relevant training, write newspaper articles or comment on the ‘workless equals worthless’ bollocks so prevalent in the media. Use any skill that you have to chip away at government and media propaganda that dehumanizes claimants, from your research skills, to your creative skills, to your professional skills – anything and everything.
We have such power, such privilege as professionals, whatever the personal circumstances of our lives. Let’s use this, in solidarity with claimants, to make things better.
Huge thank you to WinVisible not only for their brilliant medical exemption guide – link below – but their advice on recording. Thanks to Rita Binns of Recovery in the Bin for making so many helpful comments on the draft and generally being amazing. And to the very lovely ’RF’ for reminding me that, in David and Goliath fights, sometimes David DOES win.
More advice on professionals’ letters of support