Written evidence submitted by Parkinson’s UK (COV0044)
About Parkinson’s UK
- 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.
- Parkinson's UK is here to make sure people have whatever they need to take back control – from information to inspiration.
- 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
- 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.
- 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.
- While the majority of people develop symptoms after the age of 65, thousands of working age people are also affected[2].
- We welcome the committee’s inquiry into coronavirus and food supply. We have sought insights and advice from our staff who provide advice and support to people with the condition and their families and carers and also taken insights from our social media channels to respond to some of the committee’s questions.
- A summary of our points are:
○ While people with Parkinson’s are not clinically extremely vulnerable, they are vulnerable in other ways and many are currently struggling to access supermarkets and food supplies.
○ Our supporters are experiencing a variety of issues getting food including accessing online deliveries, waiting in long lines and being unable to take advantage of early shopping slots due to their medication, navigating the supermarket and being allowed to have support to do so and knowing about offline options.
○ Parkinson’s UK is hopeful the NHS Volunteers scheme will reduce anxiety about access to food, alongside the work we’re doing with DEFRA to communicate the options available to vulnerable people.
○ We believe that wider communications are required, but engagement by supermarkets to ensure their services meet the needs of disabled and vulnerable people is crucial and would welcome support from the committee around this.
Are the Government and food industry doing enough to support people to access sufficient healthy food; and are any groups not having their needs met? If not, what further steps should the Government and food industry take?
- People with Parkinson’s need to maintain a healthy and balanced diet to help ease constipation, low mood, reduced bone density and weight changes.
- Everyone with Parkinson’s is different. Many people with the condition are not clinically extremely vulnerable. However, we believe that some people in the more advanced stages of the condition, and some of those who have other conditions alongside their Parkinson’s, would meet the clinical criteria to be classified in this way. Alongside this many people with the condition who may not meet the criteria are vulnerable in other ways and will need support to get food supplies. We are pleased the government has acknowledged this[3].
- Since 16 March we have seen a sharp rise in demand for our advisory services[4]. The concerns expressed by our community in these calls have changed over time. Initially callers were worried if there was an increased risk of being unwell with coronavirus due to having Parkinson’s and what a reduction in their specialist health service might mean for the management of their condition.
- However, once the government social distancing measures[5] were introduced, the issues raised on the calls were around mental health, anxiety, people feeling isolated and being able to complete everyday tasks like shopping and getting medication. In fact data from our helpline shows that almost 3 times the number of our clients contacted us the week commencing 20 April 2020 about shopping and groceries queries than they did in the same week in 2019[6].
- This was received from the child of someone with Parkinson’s to our helpline and illustrates the concerns from some of our community:
“I wonder if you can help. My 94 year old mother has Parkinson's. I do her online shopping with Sainsburys and at the moment we are finding it increasingly difficult to book slots for delivery. It appears Parkinson’s doesn’t come under 'extremely vulnerable'. Sainsburys say they would need confirmation of her status before they can make more delivery times available to her. I find it incredible that any person who needs constant care with people coming from outside (she has carers four times a day) should not be seen as vulnerable. And while I am concerned about my mother, I am equally concerned about anyone dealing with Parkinson’s be they patient or carer.”
- Many of our supporters are having problems:
○ Accessing online supermarket deliveries.
○ With online shopping as they are not online and have no way of setting up an account and paying for their shopping.
○ Waiting in long lines to get their shopping as they cannot stand for sustained periods of time.
○ Taking advantage of quieter shopping times at the beginning of the day until their medication has kicked in.
○ Navigating supermarkets due to social distancing measures that have been introduced (one-way systems are difficult for those with cognitive issues), unpaid carers who are supporting their person with Parkinson’s are being turned away and this support is crucial to enable someone with the condition to complete the task safely.
○ They don’t know how to access offline shopping support.
- For those who are shielding getting access to shopping and supermarkets may be eased by the government arrangements through the NHS Volunteer scheme, which is only operating in England. But for those in our community who are not on the extremely vulnerable list, but are vulnerable in other ways, including not having anyone to shop for them this is causing extreme anxiety.
- Parkinson’s UK was a signatory to a joint letter to Department for Environment, Food and Rural Affairs (DEFRA) and Supermarket CEOs[7]. However with lockdown moving into its sixth week, we need solutions and clear communications quickly to enable disabled people and those who care for them, who are not on the extremely vulnerable list to access food and supermarkets.
How effectively has the Government worked with businesses and NGOs to share information on disruptions to the supply chain and other problems, and to develop and implement solutions?
- The joint charity letter received a swift response from DEFRA and there have been several positive meetings with officials and the minister Victoria Prentis where we continue to explore options to ensure our vulnerable people can access food and supermarkets.
- However there hasn’t been any response to date from the CEOs of supermarkets. We are keen to engage them and work collaboratively to address the concerns of our communities.
How effectively have these actions been communicated to the public?
- Parkinson’s UK welcomes the willingness from DEFRA to work jointly with the charities and we have seen some progress around sharing information on offline options vulnerable people can access to get food supplies delivered to them. However we haven’t been able to widely communicate these details with our community yet and we fear that further delays will exacerbate the stress and anxiety of those who are vulnerable.
- The blog DEFRA published on 21 March which was updated on 29 April[8] will help to address some concerns and we’ll share with our community, however we’re not sure how far this communication has been shared and would encourage DEFRA to ensure the contents are disseminated more widely, although we recognise the challenges in getting visibility of these messages in the current climate.
- We will continue to work with DEFRA to ensure vulnerable people have access to supermarkets, however we also need action from supermarkets to ensure that their services meet the needs of people with Parkinson’s, their carers and other vulnerable people who are struggling to access food and supermarkets. We would therefore welcome the committee's support on this matter.
April 2020
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