Your patient with Parkinson's: providing evidence to benefits assessors

Helpful supporting comments about your patient with Parkinson’s could include:

• Emphasising that there's no cure for Parkinson’s and that it's a progressive condition which will only get worse over time.
• Reporting on the degree of fluctuations and unpredictability of symptoms experienced by your patient, which might include sudden freezing, on and off periods or periods of excessive fatigue when they can do very little. Clarify if these last for nontrivial periods of time or are disruptive and stop the patient from doing things when they want to.
• Commenting on how Parkinson's symptoms can affect your patient, for example: difficulty walking, pain, fatigue, uncontrollable movements, balance or risk of falls, anxiety, depression, speech or cognitive issues such as concentration or memory problems.
• Commenting on how long it can take your patient to accomplish tasks related to everyday life. These could be activities such as eating, drinking, cooking, using the toilet or getting about. Clarify whether it's likely to take them more than twice as long as it would for someone without Parkinson's.
• Any awareness you have of the intensity of care and support they receive from formal care services or loved ones.
• Listing any medical or therapeutic interventions that you have given or recommended to your patient. For example, these could have been used to treat pain, fatigue, sleeplessness or anxiety. This will help demonstrate the complexity of Parkinson's treatment. 
• Commenting on whether your patient has experienced side effects from medication and the effects of these on everyday life. For example, involuntary movements affecting mobility or an increased risk of falls and issues with eating, drinking and dressing.
• Commenting on whether you have advised the patient to take precautions in everyday life to accommodate their Parkinson's. These may include giving up work or other activities such as driving.
• What emergencies, hospitalisation or injuries the patient may have sustained in recent times due to their Parkinson’s, for example due to falls.

When being assessed, patients sometimes ask if they should talk as if every day is their worst day. If asked, advise them not to do that. They should definitely mention their worst days, but also explain the variations and any related things like unpredictability, or how disruptive fluctuations can be.

Miss S, 48, has recently been awarded ESA and put into the Work Related Activity Group (WRAG), which implies that she will be able to return to work in the future.

Her GP felt Miss S should be in the Support Group as she is unlikely to be able to work again, and wrote the following statement in support of her appeal. Miss S was successful in her appeal and was placed in the Support Group.

"Miss S takes 3 or 4 hours in the morning to 'get going’, and experiences severe mobility problems around the house during this period. Her balance is poor. She needs to lean on furniture and fittings as she moves around. She finds it very difficult to cope with daily living tasks. She suffers from dyskinesia (involuntary movements), which means that her ability to undertake manual tasks is unpredictable and she is also in a lot of pain.

"She is immobile for considerable periods every day unpredictably and her level of fatigue means that no task can be undertaken consistently for any predictable period of time. Her concentration is affected by fatigue and could lead to danger for herself and colleagues and possibly for customers.

"She would be completely unreliable in any job that depended on timekeeping – such as coming into work, or working at home, at a particular time or for a particular period."

"Mr A has Parkinsons and as well as significant physical difficulties getting around, communicating, etc. He suffers from anxiety. This is a common feature of Parkinson's and is particularly problematic because anxiety worsens his Parkinson's symptoms. I am concerned that if he had to go to job interviews or engage in work preparation or training it would worsen his symptoms."

"Mrs J can walk but there are times of the day when in practice she is too tired to do so. She is also very unsteady on her feet and at times will not be able to move about safely, or at a reasonable speed. These relate to fluctuations in her condition as well as to the effects of medication and onset is not always predictable." 

"Mrs G lives with Parkinson's which she has had for 17 years. She has recently had to see a neurologist as her condition has caused her an increasing number of problems including a couple of falls due to blood pressure changes.

"As with all Parkinson's patients, her symptoms are sometimes very variable. In general, her partner has to help her get out of bed in the morning, has to help her with washing and toileting routines and give her medications. It is only after this that she is sometimes able to move gradually downstairs. On some occasions she is very stiff and on some occasions she can more easily.

"Her symptoms are always much worse with stress. On some occasions she is able to shower after her medications have taken effect. On other occasions this is impossible.

"She often shuffles or hobbles around her house. She can manage stairs reasonably well but finds walking around on the flat more difficult and often has to use a stick.

"She can freeze in crowded situations, which makes going out, especially being with other people, quite difficult. At times she finds it very difficult to turn around and her movements are stiff and slow. Her speech is difficult at times and certainly quite difficult to understand today. She tries hard to prepare food in her home but is unable to carry saucepans with any food inside them and her partner usually helps with the cooking routine.

"As the evening goes on, she becomes more and more stiff and her partner needs to aid her undressing and getting back into bed after her night-time ablutions routine."