Written evidence submitted by Parkinson’s UK (CBP0020)

 

About Parkinson’s UK

  1. Every hour, two people in the UK are told they have Parkinson's - a brain condition that turns lives upside down, leaving a future full of uncertainty.

 

  1. Parkinson's UK is here to make sure people have whatever they need to take back control – from information to inspiration.

 

  1. We want everyone to get the best health and social care. So, we bring professionals together to drive improvements that enable people to live life to the full.

 

About Parkinson’s

  1. There are over 40 symptoms of Parkinson’s and these can include freezing, tremor, painful muscle cramps, difficulties speaking and swallowing, anxiety, depression, dementia and hallucinations.

 

  1. Currently 145,000 people in the UK are living with the condition[1]. With population growth and ageing, we estimate this will increase by nearly a fifth to 172,000 by 2030. Parkinson’s not only affects those with the condition but also has a significant impact on family, friends and carers.

 

  1. While the majority of people develop symptoms after the age of 65, thousands of working age people are also affected[2].

 

Delays to care and treatment caused by the pandemic

  1. We welcome the committee’s inquiry into clearing the backlog caused by the pandemic. Recent data published by the Neurological Alliance has found over 10,000 people waiting more than a year waiting for neurology services[3]. People with Parkinson’s have been hit hard by cancellations and postponements of care and treatment they need to live well with the condition.

 

  1. Many NHS staff providing care for people with Parkinson’s were redeployed during the pandemic to help handle the extra demand on the NHS caused by covid-19. Which led to people with Parkinson’s with reduced access to the healthcare they needed to manage their condition. This has had a devastating impact on the physical and mental health of numerous people with Parkinson’s and their loved ones.

 

  1. The Neurological Alliance has obtained data that compared hospital-based appointments for neurology, physiotherapy, speech and language therapy and occupational therapy and hospital admissions for people with neurological conditions for the first lockdown (March - June 2020) to the same period in 2019. The majority of people in this dataset, 58%, had a diagnosis of Parkinson’s. The findings showed:

        Neurology appointments although they remained steady, face-to-face appointments fell by 31%.

        Physiotherapy appointments fell nationally by 44% for people with neurological conditions.

        Speech and language therapy appointments fell by 23% overall.

        Occupational therapy appointments saw a 37% drop compared to the same period in 2019.

        Hospital admissions declined nationally by a third. Emergency admissions were reduced by 20% and planned admissions fell by 55%.

 

  1. A survey carried out by Parkinson’s UK and Lancaster University in May 2020 asked more than 2,000 people affected by Parkinson’s across the UK, including people with the condition, their families, carers and friends, about their experience of lockdown. On healthcare appointments the survey found:

        34% of people with Parkinson’s had appointments with their Parkinson’s nurse cancelled and of these, 52% were not offered a phone or online appointment. 

        Similarly, 34% had appointments with their Parkinson’s Consultant cancelled and of these, 68% were not offered a phone or online appointment. 

        29% had a GP appointment cancelled.

        Cancellation rates were also high for those accessing physiotherapy (70%), speech and language therapy (57%), occupational therapy (55%) and mental health support (50%) and phone or online alternatives were limited.

        15% of respondents decided to cancel appointments.

        Cancelled appointments were seen by many as a contributor to deterioration of the condition and some people with Parkinson’s shared they were worried they were storing up future difficulties

 

  1. Parkinson’s UK has seen an increase in support-related calls to our helpline and local adviser staff due to the continued impact of delays to health care appointments. As demonstrated by these statistics:

        The number of clients supported by our adviser services has increased each month from December 2020 and this is expected to continue.

        In July 2021 this reached a high of 2,877 clients supported in that month. In July 2021, we supported 274 more individual clients across the service than in January 2021 and 546 more than in July 2020.

             

We are seeing the impact of these delays on people with Parkinson’s physical and     mental health, as demonstrated by the following quote by a person with Parkinson’s facing a delay to Deep Brain Stimulation surgery -

 

“I’m having one major attack of dystonia every day now, it lasts for 2-3 hours, I’m just switched off. I can cope with it, I can. I just want to be me.”

             

 

  1. Parkinson’s UK conducts a quarterly survey of people who use Parkinson’s UK information and support services. From the period July 2020 to April 2021 there has been a steady decline in people reporting their Parkinson’s NHS service is ‘good or improving’ from 62% to 52%, with only a recent uptick for the latest figures for July 2021 where this figure was 67%.

 

  1. Deep brain stimulation (DBS) is a type of surgery where electrodes are implanted deep inside specific parts of the brain. If successful, DBS can provide significant improvement in an individual symptoms and quality of life, but DBS is not a

suitable option for everyone with Parkinson. Figures from Boston Scientific (a manufacturer of DBS systems) showed a dramatic drop off in procedures during the pandemic especially during the first and third lockdowns where this was upto 100% compared to 2019/20 numbers.

 

  1. We have heard numerous reports from Parkinson’s nurses reporting ‘deconditioning’ of people with Parkinson’s as a result of the pandemic, having to limit their movements and their usual sources of support (e.g. access to physio or exercise classes) being closed down during the various lockdowns.

 

  1. The following is a statement from a physiotherapist based in the East Midlands on the current state of play for people with Parkinson’s in their area:

 

“COVID-19 has had a major impact on people with Parkinson's in our region. As a result of Lockdown restrictions and self-isolation, many patients have not been able to access therapy assessment and intervention when they needed it. Staff in many services were redeployed during the height of the pandemic and most outpatient services ceased all face-to-face contact with patients. A few services managed to leave one or two members of staff to try to help patients by telephone or video. All of this has led to a backlog in the number of people with Parkinson's who need therapy services. 

 

“As we have begun to emerge from the pandemic, we are finding that many individuals are experiencing more complex symptoms, often the result of a combination of less activity and exercise over the previous 16 months or so, and little access to services), and many therapists across the whole country have found that some individual's Parkinson's has progressed more rapidly than might have been expected. 

 

“By and large, waiting times for follow-up appointments are lengthy, and more complex problems require longer appointments with therapists. Many services have had to reduce the number of face-to-face appointments they can offer as cleaning rooms in-between patients takes extra time, further reducing capacity.

 

“There is little or no funding for extra staffing in many services, so demand is exceeding capacity. Patients who have not been able to access Parkinson's timely therapy services may be at increased risk of admission to hospital (for instance, due to falling), which, for patients with Parkinson's, can lead to a longer length of stay than someone without Parkinson's.”

 

Conclusions and recommendations

  1. We acknowledge that NHS staff have been working flat-out throughout the pandemic and this has caused many to have been left feeling exhausted and burnt-out. We believe the wellbeing and recovery for NHS staff should be a priority for the government to address going forward.

 

  1. We are supportive of the recommendations made by the National Neurosciences Advisory Group (NNAG) report - ‘Lessons learnt from the COVID-19 pandemic -Priorities in care for people with neurological conditions after the pandemic’. In the context of this inquiry we would like to specifically draw your attention to the following short term recommendations:

        NHS England and NHS Improvement, commissioners, healthcare professionals, professional bodies, patient groups and people affected by neurological conditions should work together to ensure the needs of people with neurological conditions are central to any decisions made about the recovery of NHS services.

        NHS England and NHS Improvement nationally - All restoration and neurological service improvement initiatives, for example the NHS England and NHS Improvement neuroscience transformation programme and the neurology (GIRFT) programme should actively engage and support people affected by neurological conditions to be involved in the development of this work.

        Clinicians and providers -  In order to address the backlog of appointments caused by the COVID-19 pandemic waiting lists for specialist care should be risk stratified and prioritised on clinical grounds. This must be underpinned by robust digital IT systems which capture real time data to support decision making.

 

  1. Workforce shortages in the NHS were an issue prior to the pandemic, and the impact of these shortages have been brought to bear during the pandemic. A parliamentary question last year revealed that the mental health workforce fell 50% short of the 19,000 target of additional mental health staff by 2020. In 2019 a survey by the European Academy of Neurology estimated the number of neurologists per head of population in the UK to be 1 per 39,059 where as the average for Europe was 1 per 15,799[4].

 

 

  1. We recommend that a national workforce plan is brought forward for consultation to ensure we have the workforce now and in the future so that people with Parkinson’s and other neurological conditions can access the right care at the right time in order to live well.

 

                                                                                                                                            Sept 2021


[1] Parkinson’s prevalence in the United Kingdom 2018 - https://www.parkinsons.org.uk/professionals/resources/incidence-and-prevalence-parkinsons-uk-report 

[2] Pringsheim, Tamara, et al. "The prevalence of Parkinson's disease" Movement Disorders 29.13 (2014): 1583-1590.

[3] Neurological Alliance Neurological Alliance seeks national recovery plan as waiting times soar https://www.neural.org.uk/news/neurological-alliance-seeks-national-recovery-plan-as-waiting-times-soar/

[4] Nitkunan A, Lawrence J, Reilly MM: ‘Association of British Neurologists UK Neurology Workforce Survey‘, ACNR. 2020. https://acnr.co.uk/2020/09/neurology-workforce/