NHS0029

 

Written evidence submitted by Parkinson’s UK

 

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 in the UK Parkinson’s Excellence Network,[1] 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.[2] It is the fastest growing neurodegenerative condition in the world[3]. 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.[4]

 

Context of response

  1. We welcome the committee’s inquiry into mManaging NHS backlogs and& waiting times. Like many people with long-term health conditions, people with Parkinson’s are struggling to access healthcare appointments. One of our supporters, Gary shared with us that he Berry has not seen his neurologist in two years:

"I felt that I had no one to reach out to. It’s left me feeling vulnerable and not confident with the healthcare system at all."

Gary, a person with Parkinson's

 

 

 

Impact of the pandemic on people living with Parkinson’s

Limited access to services

  1. People with Parkinson’s have been severely impacted by cancellations and delays in delivering the care and treatment they need to live well with the condition. Research commissioned by AbbVie conducted by Carnall-Farrar[5] looked at the impact of the pandemic on referrals, outpatient appointments, and elective and non-elective admissions for several long-term conditions, including Parkinson’s (using neurology services as a proxy). They found:

 

        Referrals decreased significantly during the first wave of Covid-19, dropping to around 20% of pre-pandemic levels for neurology.

        The first wave of Covid-19 saw a 40% drop in first outpatient appointments in April 2020 compared to April 2019. In 2021 this remained reduced compared to pre-Covid levels, with 6% below in September and a fall to 19% in October.

        Elective hospital admissions for Parkinson’s dropped by a staggering 89% in the first wave and remained around 48% below pre-Covid levels in October 2021.

        The first year of the pandemic saw 21% fewer first outpatient attendances for neurology than the year prior, and people with Parkinson’s saw 49% fewer elective hospital admissions.

 

  1. In 2020 and 2021, we worked with Lancaster University who surveyed people with Parkinson’s and unpaid carers on the impact of the pandemic on their condition and their access to services[6] [7]. People with Parkinson’s faced considerable challenges in accessing vital care for their condition. In 2020 appointment cancellation rates were high for those people with Parkinson’s accessing physiotherapy (70%), speech and language therapy (57%), and occupational therapy (55%). In the three months before the 2021 survey, over half (54%) of people with Parkinson’s had an appointment with their care provider cancelled, including 31% of consultant appointments. 

 

  1. From the 2021 Lancaster University survey, only 50% of respondents admitted to hospital received their medication on time. If people with Parkinson’s don’t get their medication on time it can seriously impact their health. They may not be able to move, get out of bed, swallow, walk or talk. Some people may never recover and may permanently lose their ability to walk, talk or worse. Of the participants who did not always receive their medication on time, 31% said it had a negative impact, and 36% said it significantly impacted their Parkinson’s.

 

  1. Reduced access to NHS services and government restrictions on physical activity have led to a severe deterioration (deconditioning) in people’s Parkinson’s symptoms and mental well-being. The Lancaster University surveys found that the pandemic heavily impacted people’s physical and mental health:

        Overall, 8 in 10 people with fatigue (86%), stiffness (83%) and slowness of movement (88%) reported a decline in these symptoms.

        Anxiety and depression also increased considerably, with 7 in 10 people reporting that their anxiety had worsened in 2021, more than doubling the percentage from the previous year.

        Almost four times as many people with the condition said their depression worsened (rising from 13% to 48%).

        Slowness of movement, fatigue and sleeping issues all doubled, while muscle cramps increased threefold.

 

  1. The Neurological Alliance - a coalition of 90 organisations and professional bodies advocating for people with neurological conditions so they can access the right treatment, care and support - surveyed[8] over 8,500 people with neurological conditions, including Parkinson’s, across the UK in 2021/22 (October to February) about their experiences of health and social care. They found:

        Over two-thirds (67%) of all respondents said their mental well-being needs are being met to a small extent or, most often, not at all.

        Over half (55%) of adults with a neurological condition experienced delays to routine appointments with specialists in the last year.

        Receiving the right information and support at diagnosis is critical. Almost 40% of adults were not given any information at all.

 

  1. From this survey, we have received data from the 698 people with Parkinson’s who responded. Which found widespread delays in accessing care:

        26% of people with Parkinson’s waiting for their first appointment with a neurologist experienced a delay, and 27% waiting for their first appointment with a specialist nurse experienced a delay.

        53% of people with Parkinson’s waiting for a routine appointment with a neurologist experienced a delay, and 53% waiting for a routine appointment with a specialist nurse experienced a delay.

        For people with Parkinson’s who needed a mental health appointment,  23% experienced a delay.

        For people with Parkinson’s who needed a care worker, 25% experienced a delay.

        There are similar results for:

        Occupational Therapy (34%).

        Physiotherapy (49%).

        Speech & Language Therapy (36%). 

        Rehabilitation as an inpatient (13%).

        Rehabilitation as an outpatient (28%).

        Wheelchair services (18%). 

 

 

  1. The NICE guideline[9] on Parkinson’s states that therapies (including physiotherapy, occupational therapy and speech and language therapy) should be routinely offered to people with Parkinson’s.

 

  1. Despite this, access to therapies is unacceptably variable for people with Parkinson’s. Before the Covid-19 pandemic, 31% responding to Parkinson’s UK’s Your Life Your Services survey[10] were either unable to access a physiotherapist or unsure if they could, with similar findings for access to occupational therapists (30%) and speech and language therapists (26%). The most recent UK Parkinson’s Audit (2019)[11] showed only 66% of respondents living with Parkinson's had accessed a physiotherapist, 54% an occupational therapist and 48% a speech and language.2

 

Access to neurosurgery - Deep Brain Stimulation (DBS)

  1. Due to the pandemic, the number of DBS operations across the UK plummeted, as it is classified as a lower priority for the NHS to resume. This could be devastating for people with Parkinson’s because even a few months delay can mean some people are no longer suitable for the surgery.

 

  1. The NHS has agreed to fund approximately 300 DBS procedures for people with Parkinson’s annually in England. In 2020, the number of procedures was well below this, with just 125 taking place.

        As of September 2022 the current waiting list for neurosurgery is 58,754[12].

        230-250 DBS procedures happen each year in England for people with Parkinson's[13].

        2020 data showed this dropped to 125 procedures in total in England.

A UK-wide survey of DBS centres Parkinson’s UK conducted in December 2021 found that:

        Four in ten DBS centres said their capacity to conduct DBS was reduced by 50%.

        Half of the DBS centres surveyed said their capacity to conduct DBS was reduced by between 25%-50%.

Centres responded, saying the factors that impacted their service were reduced theatre capacity, staff shortages and patient concerns about coming to hospital during the pandemic.

  1. We are hearing through the Parkinson’s UK helpline and advice services of more cases of people accessing private healthcare for a diagnosis because of the long waiting times for NHS services. It can then often be difficult to get back into the system to access NHS care.

 

  1. For people with Parkinson’s in work, waiting for care may impact their ability to work and have a detrimental impact on the economy. Research on the financial cost of Parkinson’s to the individual carried out in 2017 showed that in England they would incur additional costs of £17,095[14] a year compared to those without the condition. With inflation we estimate that in 2021 this will have risen to £19,247.

 

Assessment of the Elective recovery plan

  1. We welcome the ambitions of the Elective Recovery Plan[15] in reducing waiting times and improving patients' experience of care. However, we do not believe it will deliver the changes needed to recover Parkinson’s services and begin to undo the impact the pandemic has had on people with Parkinson’s (see point 22 below for further detail).

 

  1. We agree that growing and supporting the workforce is key to tackling the backlog and improving access to care for people with Parkinson's. There are significant shortages across the Parkinson's workforce:

        A European Academy of Neurology survey found that the UK was ranked 44 out of 45 European countries for the number of neurologists per population, with only Ireland having less[16].

        The Royal College of Physicians found that 48% of consultant geriatricians in England are set to retire within the next ten years[17].

        Across the UK, there is a shortfall of approximately 100 full-time equivalent Parkinson’s specialist nurses, according to our analysis.

        Mental health services are integral to care for people with Parkinson’s. However, a written answer to a parliamentary question in 2020 revealed that the Government was on course to miss their recruitment target for expanding the mental health workforce by 50%[18].

        There are just 64 consultant neuropsychiatrists in the UK, with up to two year waits for inpatient support[19]

        In 2020, the UK was ranked 16 out of 19 of the top European countries for physios per 1000 of the population[20].

        The UK Parkinson’s 2019 audit data shows:

        only 66% (UK figure) of people with Parkinson’s had access to a physiotherapist.

        only 54% (UK figure) of people with Parkinson’s had access to an occupational therapist.

        only 48% (UK figure) of people with Parkinson’s had access to a speech and language therapist.

 

However, there was a lack of concrete actions on training, recruitment and retaining the healthcare workforce required to provide excellent care for people with Parkinson's.

 

  1. There are several headline measures outlined in the plan where the impact on waiting times and access to care is likely to be limited for people with Parkinson’s:

        Community Diagnostic Centres - diagnosing Parkinson's requires a DAT scan which is unlikely to be available in these centres due to the cost of the equipment and the need for a specialist to diagnose Parkinson’s.

        Surgical hubs focused on separating out high volume, low complexity surgery, which may help free up theatre capacity, but do not address staff shortages or patient concerns about attending hospital due to high rates of Covid-19.

        There was no mention of rehabilitative therapies in the plan, and as you can see from the data above people with Parkinson’s prior to the pandemic struggled to access these vital services and with the addition of Long-Covid patients to therapist caseloads, this could further delay access for people with the condition.

        My Planned Care[21] could be a helpful resource. However, it lacks condition-specific advice, and the webpage is hard to navigate.

        Patient Initiated Follow-Up (PIFU) - due to the complex and progressive nature of Parkinson’s, many clinicians we have spoken to feel that only a very small proportion of people with Parkinson's would be suitable for PIFU.

 

  1. We believe the Elective Recovery Plan was a missed opportunity to address the impact of the pandemic on the health and wellbeing of people with Parkinson’s and the recovery of the NHS services they need to live well.

 

Recommendations

  1. Parkinson’s UK recommends the following actions would help to manage the NHS backlog and waiting lists for people with Parkinson’s:

        To consult on and publish the workforce strategy and plan the Chancellor announced at the Autumn Statement to deliver the health professionals needed to provide excellent multidisciplinary care for people with Parkinson’s. Planned industrial action by health professionals is likely to lenghen waiting times for care and so resolving the workforce crisis should be addressed with urgency.

        For the NHS to prioritise resources for recovery of Deep Brain Stimulation (DBS) surgery to above pre-pandemic levels, reduce waiting times and prevent people from missing out on DBS.

        Prioritise access to mental health services for people with Parkinson’s and their carers to enable them to recover from the strains of the pandemic.

        Produce and implement a national rehabilitation strategy, and for every Integrated Care System to have a rehab lead on their Integrated Care Board, as called for by the Community Rehab Alliance.

        To establish a Neurology Taskforce to work across the four UK governments as called for by the Neurological Alliance.

        Review My Planned Care website in consultation with people with lived experience of waiting for care.

 

 

November 2022


[1] Parkinson’s UK - https://www.parkinsons.org.uk/professionals/your-network, accessed 17 January 2022

[2] Parkinson’s UK. 2018. ‘The incidence and prevalence of Parkinson's in the UK.’  https://bit.ly/3ntTYJK, accessed 14 January 2022

[3] Bloem, Bastiaan, et al. “Parkisnon’s disease” The Lancet Vol 397, issue 10291, P2284-2303, June, 2021. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)00218-X/fulltext

[4] Pringsheim, Tamara, et al. 2014. ‘The prevalence of Parkinson's disease’ Movement Disorders 29.13: 1583-1590

[5] Carnall Farrar (2022) ‘Recovery in long-term conditions’ https://www.carnallfarrar.com/case-studies/recovery-in-long-term-conditions/

[6] Lancaster University and Parkinson’s UK (2020) ‘The Impact of COVID-19 Restrictions on People Affected by Parkinson’s’https://www.parkinsons.org.uk/sites/default/files/2020-07/Parkinson%27s%20UK%20Covid-19%20full%20report%20final.pdf

[7] Lancaster University and Parkinson’s UK (2022) ‘The Impact of COVID-19 Restrictions on People Affected by Parkinson’s - Findings from the Second Survey by Parkinson’s UK’https://www.parkinsons.org.uk/sites/default/files/2022-03/Parkinson%27s%20UK%20-%20Impact%20of%20COVID-19%20Report%20%282022%29%20.pdf

[8] Neurological Alliance (2022) ‘Together for the 1 in 6: UK findings from My Neuro Survey’ https://www.neural.org.uk/wp-content/uploads/2022/05/Together-for-the-1-in-6-UK-Findings-from-My-Neuro-Survey-v6.pdf

[9] NICE (2017) Parkinson’s disease in adults NICE guideline [NG71] https://www.nice.org.uk/guidance/ng71

[10] Parkinson’s UK (2028) Your Life Your Services survey https://www.parkinsons.org.uk/about-us/access-multidisciplinary-care

[11] UK Parkinson’s Excellence Network (2019) ‘2019 UK Parkinson’s Audit’ https://www.parkinsons.org.uk/professionals/past-audits

[12] NHS England (2022) Consultant-led Referral to Treatment Waiting Times Data 2022-23 https://www.england.nhs.uk/statistics/statistical-work-areas/rtt-waiting-times/rtt-data-2022-23/

[13] NHS Digital Hospital Episodes Statistics https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/hospital-episode-statistics

[14] Gumber A, Ramaswamy B, Ibbotson R, Ismail M, Thongchundee O, Harrop D, et al. Economic, social and financial cost of Parkinson's on individuals, carers and their families in the UK. Project report. Sheffield: Centre for Health and Social Care Research, Sheffield Hallam University; 2017 https://www.parkinsons.org.uk/sites/default/files/2017-07/CS2547%20Cost%20of%20Parkinson%27s%20report%202017%20-%20UK_1.pdf

[15] NHS England (2022) ‘Delivering plan for tackling the COVID-19 backlog of elective care’ https://www.england.nhs.uk/coronavirus/delivering-plan-for-tackling-the-covid-19-backlog-of-elective-care/

[16]Association of British Neurologists ‘Neurology Workforce Survey,2018-2019’ www.theabn.org/resource/collection/219B4A48-4D25-4726-97AA-0EB6090769BE/2020_ABN_Neurology_Workforce_Survey_2018-19_28_Jan_2020.pdf

[17] Royal College of Physicians (2020) ‘Life in the time of COVID-19: the 2020 UK consultant census’ https://www.rcplondon.ac.uk/projects/outputs/life-time-covid-19-2020-uk-consultant-census

[18] Dorries, N (2020) ‘Mental Health Services: Recruitment’ written answer 13 July 2020 UIN 72921 https://questions-statements.parliament.uk/written-questions/detail/2020-07-13/72921

[19] Royal College of Psychiatrists. 2021. ‘Census 2021. https://bit.ly/3OXeZZ3

[20] https://www.theglobaleconomy.com/rankings/physiotherapists_per_1000_people/Europe/

[21] https://www.myplannedcare.nhs.uk/