Applying for Personal Independence Payment following acquired brain injury

We wanted to highlight the issues surrounding applying for Personal Independence Payment (PIP) for those with acquired brain injury (ABI). We would be grateful for any feedback about how other services support patients to navigate this process and manage the issues that inevitably arise for this clinical population. 

ABI due to trauma, infection, disease, poisoning, anoxia or stroke, results in complex physical, cognitive and emotional sequelae. Our patients are often unable to immediately return to work and therefore are required to apply for benefits. PIP is a benefit that aims to help with some of the additional costs associated with either long-term ill health or a disability. The monetary rate received depends on the functional impact of a condition rather than the condition itself. Theoretically awarding a benefit based on how the condition affects the individual is logical and fair; however, in practice, the judgement seems to be based on criteria that are subject to individual differences between assessors. It is especially problematic in cases that involve cognitive/socio-behavioural rather than physical difficulties.

The PIP process is highly prescriptive, focusing on specific functional criteria (i.e. 12 daily living tasks including washing, dressing, preparing food, communicating verbally, and mobilising). Points are awarded depending on the level of support needed to complete specific tasks. A systematic assessment should capture the heterogeneous, complex and often fluctuating pattern of difficulties associated with ABI; however, many patients report that their cognitive difficulties do not meet the criteria. Upon further inspection there are several aspects of the application process that disadvantage those with cognitive difficulties. 

Firstly, to be eligible to apply for PIP an individual must have had the symptoms for at least three months with the prospect of the symptoms lasting over 12 months. For ABI, onset is typically sudden and, although a degree of natural recovery is likely, prognosis and subsequent functional impairment is difficult to predict, especially during the acute phases. There are further difficulties imposed by extended assessment wait times; according to the Department for Work and Pensions, the PIP process takes between 15 and 16 weeks; but we have found it to take up to six months on some occasions. A lot can change for our patients during this timeframe.

There are also issues with the extensive length of the PIP application form. Patients, family members and even professionals can find this documentation challenging. From a cognitive point of view, completion of the documentation requires good attention, memory, language (reading and writing), executive functioning (reasoning, planning, problem solving, organising and self-monitoring) as well as effective emotional regulation, insight and awareness. People also need to be prepared to acknowledge they have disabilities, which is an emotional barrier. Thus for patients whose difficulties are primarily cognitive in nature, this process is far from accessible. Furthermore, there is a clear emphasis on physical disability, with limited consideration of mental health issues and virtual disregard of socio-behavioural difficulties. Because 'you can't see these difficulties', patients frequently exhibit what we have labelled 'if only I had a broken leg phenomenon'.

Following completion of the form, an assessment is often required. This is invariably stressful and anxiety-provoking for patients and their families as they feel they are required to 'justify' their difficulties, often in the absence of clear physical abnormalities. Our patients and their families have described the process as 'demeaning'; capturing an 'unrepresentative snapshot' of the condition and neglecting fluctuations common in ABI patients. They also feel that the standardised one-size-fits-all approach is not appropriate for different people with diverse conditions. They report that assessors tend to take responses or presentation at face value rather than considering underlying issues. This has significant implications for those with ABI, who may have issues with diminished insight and awareness. The suitability of the process is further called into question by the high appeal rate (e.g. 40% were upheld between July and September 2015).

We are very fortunate to have two Headway workers within our service to help patients and their families navigate this challenging process. However, we would be keen to learn how other neurorehabilitation services manage this.  

Cara Knight, former Headway Coordinator
Dr Nichola Anderson, Clinical Psychologist
Sunderland & Gateshead Community Acquired Brain Injury Service