The psychological impact of assessments is an often hidden aspect of living with disability. Assessments come in many shapes and sizes, from medical assessments by doctors or consultants, to assessments for Motability vehicles, assessments for wheelchairs, aids and equipment, to social services or continuing healthcare if you receive a budget to employ a Personal Assistant (PA) to support you in daily living, to work capability assessments and assessments for housing benefit and council tax if you're unable to work. Hard to read that long sentence? Yes, so many assessments are long and arduous work too.
Even for simple things like prescriptions for continence products, the GP is assessing whether you're using too many of these items and may refuse to prescribe any more in a certain allotted time.
Do you remember during the first COVID-19 lockdown, many people were panic buying toilet paper? Perhaps a similar experience would be the supermarket telling you to go to the loo less because you had used your allotted quantity. Many of us went out to scrounge for alternative ways to get toilet paper, but what if it just wasn’t available?
Assessments are incredibly intrusive, there is a forced intimacy required from the disabled person to disclose personal information frequently and repetitively.
Medical assessments, for example, often require someone to remove their clothes in front of one or several strangers. Assessments for PAs can involve a professional watching you go to the toilet, shower and dress so that they can approve that how you do these things is right according to their manual for your condition or they won't give you funding. You're rarely asked what your thoughts are about your own body or condition.
In our family we undergo at least a minimum of 20 assessments or reviews a year. Some may be a one-off meeting, but others will drag on and on with letters and more information being required.
We have a Motability vehicle and the assessment for this can take more than a year. After you have the vehicle we have at least three different companies monitoring different parts of the vehicle several times a year. On top of that, we have quarterly reports to complete for the NHS. We also have a hoist which gets assessed by two different companies several times a year. If my partner needs a new wheelchair cushion he needs to ring several numbers to get an appointment and then has to wait up to six months to get an assessment. He then negotiates with the staff member at wheelchair services that he knows his own body better than they do, then waits several months before the cushion arrives.
Many people, our family included, often go without the support we're entitled to because the stress and humiliation are not worth it.
With all assessments, the focus is on what you can’t do and this process actually encourages you to exaggerate your answers because the reality is that you often get less than what you ask for.
Always waiting for a professional to agree that you actually do need that thing and aren’t just applying for stuff willy-nilly, always needing a supporting statement from a professional because your own word is not enough.
Power firmly in their hands because if you don't do exactly what you're told and agree to the intrusive nature of the assessment, that support will be withdrawn.
Yet they change the criteria often. Staff turnover and caseloads are so high that the next person rarely knows anything about you so you have to start again.
If you say nothing has changed, see my previous notes, the standard response is, "sorry, I still need to ask you the same questions again”.
And always the hidden message is that you're less than, that your opinion doesn’t matter and that you should be grateful for what you're given because you're a burden on society.
We often think of trauma as large one-off events, but what's ignored here is that a cumulative build-up of assessments over the years also results in trauma. Trauma that is exacerbated by the knowledge of relentlessness. That in order to live, one must submit oneself again and again to more invasiveness, abuse and a slow constant hacking away at your sense of self and sense of purpose.
One of my clients was assessed by 26 different NHS mental health staff before she was finally awarded a personal health budget by Continuing Healthcare. The process of assessment by the mental health services that were supposed to help, actually increased her suicidal thoughts.
A study in 20161 showed that the programme of work capability assessment was indeed associated with an increase in suicides, self-reported mental health problems and antidepressant prescribing.
We are so used to this system of welfare, that rarely do people stop to ask whether there could be a better system or whether the combined impact of all these assessments actually does more harm than good? Rarely does anyone ask what impact this has on a disabled person and their family? On their mental health, their self-esteem and their purpose in life?
As therapists, part of our role is to address the injustices that our clients experience. Challenging disablism in society can begin in the therapy room. It's being alongside clients as they discuss the impact of things like assessments and the emotional cost to them. It’s about bringing our awareness of disablism into the therapy room and inviting the client to share their experiences while keeping in mind that every disabled client has a unique experience.
Many clients are working full-time and dealing with all things disability related, including assessments on top of their full-time jobs, running a household and children, etc.
When working with disabled clients, it can be helpful to consider this back story when we consider the flexibility of the service we offer. The time and energy that go into assessments and other disability related tasks may impact on someone’s mood, attendance, punctuality and availability to be present in therapy and make the changes they desire.
A useful and very exciting part of therapy may be using a trauma informed approach to look at ways the client can support themselves to minimise the damage these processes cause.
Finding peers is also an essential way to get support and ideas to manage these common challenging situations by supporting each other. It’s one of the reasons our organisation Spokz People CIC launched an online wellbeing community and programme in November 2021.
1. 'First, do no harm': are disability assessments associated with adverse trends in mental health? A longitudinal ecological study. Barr B, Taylor-Robinson D, Stuckler D, et al. J Epidemiol Community Health 2016;70:339-345.
Views expressed in this article are the views of the writer and not necessarily the views of BACP. Publication does not imply endorsement of the writer’s views. Reasonable care has been taken to avoid errors but no liability will be accepted for any errors that may occur.