By Jan Sargeant
Jan Sargeant has been actively working to support people with Parkinson’s in a variety of ways since her diagnosis in May 2016. She was lead artist on the Oxford Nuffield Picturing Parkinson’s project working with Professor Chrystalina Antoniades. Her published work includes much poetry and one novel which are not Parkinson’s related but she also writes articles which raise awareness of the condition amongst the general public. A retired university lecturer, she is currently working on a study of the experience of patients with Parkinson’s, drawing together the stories of over 40 participants . She hopes this research will support new and improved ways of managing the particular needs of people with Parkinson’s when admitted to hospital.
“Make them comfortable” is a phrase used by doctors when they feel there is no quality of life nor any reason to prolong it. It’s a euphemism when talking about next steps for patients not responding to treatment and whose condition has deteriorated. It is a phrase commonly used about many patients with Parkinson’s. However, what is often not taken into consideration are the links between delays and/or errors in receiving Parkinson’s medication and the deterioration of a patient in hospital.
Concerns are articulated by family members in a new unpublished study (February 2024) which brings together the experiences of over 50 people from across the UK. “I stopped staff giving him the wrong medication three times during visits” said one woman (Case Study 2), going on to explain that another time, when she questioned why medication was over thirty minutes late, she was told the ward doctor had changed timings. As a result, there would be six hours between instead of four and no night-time Controlled Release. All this was decided without any discussion with the Parkinson’s consultant or specialist nurse and she ends, “The result…. has had a devastating effect on his Parkinson’s.”
On the other hand, there are some examples of excellent practice. In another person’s experience (Case Study 6), the hospital negotiated with the specialist consultant that patches would be used short term and his following recovery was supported by the use of a large clock poster above the bed so no medications were ever missed. Whilst these were exceptions rather than the norm, they offer ways forward to consider.
The “Get it on time” (2022) and “Every minute counts” (2023) campaigns by Parkinson’s UK highlighted the need for Parkinson’s medication to be given on time. Trusts across the UK signed up to the campaigns and yet, in practice, what has this meant? As this new study shows, there are some hospitals which have found effective ways to ensure this is achieved consistently across wards. Others, however, are finding it more of a challenge.
Initial findings
Whilst catchy slogans are excellent shorthand, the meaning behind them needs to be unpicked for understanding of why “every minute matters”. There needs to be more awareness of the potential impact of patients not getting “it on time.” What’s more, there must be recognition that “on time” is relative to the patient not the time of drugs trolleys being opened as routine practice. It is vital that all staff understand the full implications around this issue so that the slogan is only a quick reminder of what is actually a very complex set of inter-acting elements. Many staff seem unaware that such errors and delays can result in all sorts of problems – swallowing, communication, confusion, for example, and when these symptoms do then appear, they are explained by lack of appetite, refusal to eat, dementia and other conditions. The link between these and the medication isn’t made, so when a patient’s Ropinerole was suddenly doubled by a ward doctor and this led to hallucinations, mental health issues were blamed.
Whilst there have been staff development packages developed by Parkinson’s UK, how effective they are can only be assessed in terms of impact on patients and this new study provides much evidence that impact on patients is patchy and inconsistent even within the same hospital sometimes. Online staff development packages are required for every medical practitioner as part of the mandatory training already provided and expected of staff. This already covers a vast number of conditions and issues, for example epilepsy, AIDs, diabetes …… it does not include Parkinson’s.
This training and development must be underpinned by coverage of key aspects of the disease, the multiple ways it can manifest itself, its progressive nature – so that no patient with Parkinson’s is told by any nurse they will make a full recovery if they keep taking the medicine, as one person was.
There should be a Charter for every patient admitted to a hospital ward and this should be triggered upon admission. This Charter should be completed with the carer present or their specialist Parkinson’s nurse – when you are ill, you are in no position to be completing such important information. It should contain precise details of medication, timings of each, the specific ways the condition affects the patient, any swallowing problems, movement issues. It needs to cover the diet needed and any special equipment required to eat or drink. For patients who will be immobile for any reason, flexing will be required. And so on. The name and contact details of the patient’s Parkinson’s consultant and specialist nurse team should be included and no changes to Parkinson’s medication should ever be made without evidence of consultation with them.
Patients with Parkinson’s have more challenges to overcome in order to make a recovery. The implications of the condition must be understood. The answer is not that they should be “made comfortable and allowed to go” as somne carers have been told. The answer isn’t to treat them as nuisances, a little precious about their needs, or as taking up time when nurses are already so busy. We must not accept that hospitalisation results in deterioration for so many.
We should never hear these words:
“Dad came home but the hospital had taken so much from him that we are now facing the finishing line. He won’t go back to hospital”. (Daughter)
“He was shown no dignity…... He died broken by them.” (Wife)
“I’d rather die than go back … to be treated like that.” (Person with Parkinson’s)