Q & A

13/05/2020

A quick-fire question and answer sheet for PINNT members on Home Artificial Nutrition (HAN)
 
Q: Being classed as vulnerable has been difficult in terms of seeking support with shopping  etc., is it true that there are more shopping slots being released?
A: The initial allocation for 1.5 million people was a testing time and it did not include all those who should have been considered as vulnerable. Not everyone on home artificial nutrition (HAN) needed to be classed as vulnerable but for those who did, it took time to receive the official letter and subsequent support.
 
We understand that the supermarkets are adding extra delivery slots. If you have a slot, check on your supermarket’s website for further information. Also, to meet the demand, some supermarkets are only allowing one delivery slot per week. Additionally, you can register for support from the Royal Voluntary Service; use this link to register - they offer support with shopping, collecting medication, a friendly phone call – you can ring them on 0808 196 3646 (8am to 8pm). Be aware that you may not necessarily have the same person if you use the service regularly; however, this is unconfirmed.

In Northern Ireland the priority shopping system is finally up and running, find out more here.
 
Local support: we are aware that many local councils have set up a support system, which operates on the same basis as the one above, however, you will continue to have the same volunteer if both parties are happy. Telephone your local council for further information or locate a local group on social media, which will provide lots of local information. We understand that some councils also have a list of local shops which offer deliveries.
 
For those with unique needs, being able to access particular items from major supermarkets is not always possible. Using the local volunteers is a good way to purchase the items you need. It also allows you to have a conversation with the volunteer to explain any specific requirements you have. Also, the supermarkets may have a limit on the number of items you can order; if you only need certain items then the cap may prevent you from getting what you need. Also, there is a minimum spend, which may not be suitable for you.
 
Q: As official guidance on potential changes to the current ‘stay at home’ information is reviewed, will the rules on shielding change?
A: ‘Stay at home’ remains in places for three countries. England has announced a new message ‘Stay alert’ – it has left many people confused. However, while we recognise how difficult it may be for some people to continue shielding or maintain self-isolation, it has been put in place to protect you. Please stay informed and check out the information for shielding and vulnerable people.

The official guidance is aimed at the wider population; everyone is still at risk, but for vulnerable people the rules stay the same. Sometimes it helps to have the official guidance and support but always use your common sense - you know yourself or your loved one and you are more than familiar with their personal medical history and know their vulnerability – ‘just because you can doesn’t mean you should.’

Q: The official messages are that the NHS is open for routine business. I have tried to contact my hospital or team. What should we do if we do not hear back from them?
A: Some people received written information from their hospital or centre which outlines what to do during these unprecedented times. Staff may have been redeployed to other duties which may account for their lack of availability. If anyone needs help, you should always use your usual contact details. Alternatively follow any new instructions you were sent. Remember your GP practice is open. They may not usually be your first line of support but during these unprecedented times they may be able to offer support or advice. 

Follow the official advice if you have any symptoms that give you cause to be concerned in relation to COVID-19. Some of the symptoms of COVID-19 may be like an infection or complication you have experienced in the past. If in doubt, seek advice.

Q: I have not noticed any major change to my homecare service for my enteral (tube feeding) nutrition apart from the fact that they will not bring the delivery into the house now. I can do it but what if I could not?
A: The delivery process has been modified to implement safety measures for all concerned. A statement has been prepared, which was circulated to PINNT members. You can read the statement here.

Q: My homecare for my parenteral nutrition (PN) is operating pretty much as normal apart from the delivery precautions. I have had some products substituted, but they all do the same job. I am worried about the potential for a second wave and possible reduced compounding.
A: You can find the current information here it was last updated on 27 March 2020. A further update is expected. As soon as we have it, we will share it. Given the detailed planning when COVID-19 first struck, we believe the same plans will be used to support the homecare services and will be reviewed, as necessary.

Q: Could a second wave of the virus affect the future supply of supplies and equipment to us?
A: The guidance remains the same for both enteral and parenteral homecare. Do not stockpile. Your nutrition infusions have not changed; if they have for any reason, then your requirements will be adjusted by the company.

Q: As the rules have been relaxed in England, will it be okay to allow close friends and family into my home?
A: Only people living in the house should enter the house unless you have known key workers such as nurses coming to help with procedures and treatments if you are self-isolating or shielding. Stay informed with the current guidance.

Q: I purchase an annual travel insurance policy, it is due for renewal, should I renew it?
A: Firstly, always check the current information regarding travelling abroad here. In respect of renewing your travel insurance you need to consider all the current information, both in terms of the likelihood of the travel industry being able to operate safely and fully, while also giving due consideration to the impact of coronavirus and any potential outbreak at your holiday destination in the future. We strongly suggest that any future travel plans are discussed with your usual medical team. Currently we have no indication as to how the impact of coronavirus will affect travel insurance policy prices, both annual and single trip policies.

Q: When the vaccine is available, will those in the vulnerable group be some of the first people to receive it? 
A: We look forward to hearing when a vaccine will be available, however we need to be realistic in terms of when this may be. As progress is made, we believe the plans will be shared via the appropriate channels.

Q: When the vaccine is available, will it be suitable for those of us on home artificial nutrition?
A:  Suitability will be based on several factors. People on HAN will hopefully receive advice from the appropriate sources.

Q: I am finding it difficult to manage my mood swings during this situation, is this normal?
A: It is perfectly normal to go through different emotions. The most important thing to do is recognise this and try to talk to someone. People are saying that as there is no known end in sight, returning to normal life seems a long way off. We urge people to seek help if necessary, it is perfectly acceptable to seek support.

Q: I have taken part in the PINNT COVID-19 survey, I found it helpful to share how I have been feeling.  When will we see the results?
A: We wish to thank everyone who is taking part in the survey. We have issued the second survey and hope people continue to support it. It is likely that the first feedback will come in a couple of months, the full data will be shared with those who are taking part before we decide how to share it on a wider platform. We will continue to survey people at intervals to continue capturing the changing face of COVID-19 and HAN.

Q: When will PINNT start face to face meetings?
A: As soon as it is safe to do so we will. Many of our members are either shielding or in self-isolation. It would be exceedingly difficult to have a PINNT meeting while social distancing is in place. We have started virtual get togethers. If you are a member of our closed PINNT Facebook group, you will see notifications of when they are planned.

Q: Will PINNT still be holding awareness week in August?
A: Yes, we will. We have changed our original plans as aspects of our week cannot be held due to the current restrictions. Having said that, we know that people will still be keen to join in virtually.

If you would like to submit a question, thought or idea, please email us on comms@pinnt.com
 

13052020

 

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