Minimum Service Specification
We recognise that these are far from ideal – or easy – times and that, as Neurologists, MS Nurses and AHPs you are all having to make some really tough decisions – not least about how to try and run the MS service you have spent so many years building up with far fewer hours than you would normally have available. We know that you are worried about your MS patients whilst many of you are also having to look after many other people who are very sick. We thank you for this and will do our best to support you in any way we can.
We have put together (in conjunction with some MS colleagues), a guide to the minimum service you should be aiming to provide for your patients. We have tried to suggest ways in which you can maintain the most essential aspects of your service so that you can keep yourselves and your patients safe and deliver the most urgent care in the most effective way. We hope that this will enable you to have positive discussions with your managers about continuing to staff the MS service during this crisis and will also help you (and us on your behalf) to manage patient expectations around the care MS services can provide during this period. Please remember that this is a guide rather than a mandate and if you are able to maintain your service at a higher level than the provision outlined here then you should continue to do so.
Most of the MS team have been redeployed – how can I support people with MS on my own?
We know that a lot of MS specialist nurses, practitioners, neurologists, AHPs, pharmacists etc. have had to be redeployed to work in areas away from MS and neurology. In most instances there are usually one or two members of the team remaining with the MS service to provide telephone support to the whole caseload.
Whilst many people with MS are trying hard not to have to contact NHS services we know that inevitably you will be very busy, as well as perhaps feeling anxious about just how you can provide the service people need on your own just over the telephone?
There are many different ways in which virtual care can be delivered other than just via the telephone - see How can I continue to assess and treat people with MS virtually? below for more ideas.
Consider also buddying up with other Specialist Health Professionals in your Trust who are still working within their speciality. There are likely to be common issues which they may have found a solution to and which they can share with you - or vice versa. Be prepared to think outside the box and to consider linking with teams that you wouldn’t normally have opportunity to work with.
If you have any other ideas or suggestions that you have found helpful please share with us via firstname.lastname@example.org and we can add them to this page so that you can share with the rest of the MS Health Professionals community.
How can I continue to assess and treat people with MS virtually?
All of us have suddenly had to become experts at using video conferencing technology and are finding new and innovative ways to use this to support people with MS and each other.
Many people with MS are already set up to use video conferencing and are happy to do so but many others aren’t; they may not have the equipment or understand the technology; their cognition, speech or dexterity may be impaired to such an extent that it is not possible for them to use this type of technology – some people simply would prefer not to.
Simple telephone calls are an obvious alternative and suit most people – however it can be very difficult to make a full assessment of a person with MS based purely on voice call alone. Asking permission of the person with MS to involve a carer or close family member in the call can help. Another option is to consider using some type of pre-consultation questionnaire which can be posted or emailed to people prior to a booked telephone appointment. This can help individuals identify their main issues and priorities for discussion during the call with you.
There are several different companies providing video calling facilities and which one you decide to use will depend to a large extent on your local resources and guidance from your local IT department. However programmes such as Zoom or Skype are familiar to many people now and also allow more than two separate callers to be involved at the same time – this can be an excellent solution for holding case conferences, safe guarding meetings etc.
As time goes on and there is more capacity once more within MS services these type of virtual meetings may also provide an alternative to newly diagnosed or fatigue management courses.
If you have found a different way to support people with MS on your caseload that you think others may also find helpful then please contact us on email@example.com and we can add your ideas and tips onto this page.
How can I continue to provide physiotherapy for my caseload when I can’t see them face to face?
There are actually many different resources and options available to Health Professionals who are usually very ‘hands-on’ in their treatment such as physiotherapists.
There are of course many different on-line exercise sites which you can direct people with MS towards and provide them with guidance around which exercises would be most suited to their needs. The MS Trust has a range of different resources on their site that you may find useful:
Some Centres have been able to work with local instructors to provide live training classes via closed Facebook groups. Classes such as these foster a sense of community amongst participants and also ensures that they have direct access to support from a trained instructor. Consider whether this might be something you could use locally to continue to provide classes.
Free web based platform: Giraffe Healthcare are providing their on-line physiotherapy platform free to NHS sites, hospices, charities and 3rd sector organisations for at least the duration of the Covid-19 outbreak; private physiotherapists can claim a significant reduction in the usual cost.
Giraffe Healthcare are a Community Interest Company developed by experienced physiotherapists providing a web based platform designed for people who are having difficulty accessing face to face appointments. They provide a system for delivering and remote monitoring of personalised physio programmes for people with different LTCs including MS.
As a provider you can set up pwMS with individual accounts and a range of exercises specific to them. They can log in, see what they need to do and then you can both track their progress and message each other securely and privately within the App.
You may well have come across or be using other resources or approaches – if you are able to share these with the wider Health Professional community we would love to hear from you – please contact us via firstname.lastname@example.org
How has the guidance around DMDs changed during the crisis?
Guidance around DMD prescribing and monitoring has changed significantly since the outbreak of coronavirus. This is in part to reduce the risks of people with MS who may be taking DMDs which may leave them more vulnerable to complications of the virus and to reduce the number of appointments MS teams need to provide and people with MS need to attend.
The MS Trust Covid-19 page carries up to date guidance on each of the different DMDs and is updated as soon as any changes in the Guidance occur. You can also download a PDF from the ABN with their most recent guidance for both health professionals and people with MS.
There seems to be confusion about who should shield and who is vulnerable etc. – please can you clarify?
There are different terms being used to describe behaviours we should be practicing to reduce the risk of transmission of the coronavirus. Advice about whether people with MS should shield, self-isolate or socially distance is directed at different people depending on their susceptibility to both catch the virus and their likelihood of developing serious illness if they do contract the coronavirus.
Social distancing is the minimum that everyone should be practicing at this time. This is in addition to the government advice about frequent handwashing and avoiding touching your face, using a tissue when sneezing etc.
This advice applies to most (though not all) people with MS. People with MS do not normally appear to be at any greater risk than anyone else of developing severe illness if they contract the virus and should follow the government advice aimed at the general public unless they have other risk factors.
- Staying at least 2 meters/ 6 feet away from anyone not in your own household
- Staying at home apart from essential shopping, one form of daily exercise, attending to a medical need or traveling for work where this cannot be avoided
People aged 70 and above and anyone who would normally be offered a flu jab are advised to be particularly stringent with these guidelines.
Self-isolation is required by anyone showing symptoms of covid-19. The first person to notice symptoms must stay at home for 7 days. All other members of the household must self-isolate for 14 days. Attending work, going shopping or leaving the house for other reasons are not permitted. Full details on how to achieve this is given on the government web page on self-isolation.
People who have had an infusion of Ocrevus in the last 6 months may in some cases be advised to self-isolate.
Shielding: Only those people at greatest risk of developing serious illness if they contract coronavirus should have been advised to shield.
Shielding means that people should not leave their house even for exercise or to obtain food (help is available with this – see below). People who are shielding should strictly avoid contact with anyone who has or may have been in contact with coronavirus. Some people also try and maintain as much distance as they can between themselves and other members of their household.
Shielding applies to a small number of people with MS who are considered extremely vulnerable which includes:
- people with more advanced MS who have swallowing and/or breathing difficulties
- people who are taking certain disease modifying drugs which suppress your immune system and significantly increase your risk of infection.*
*We understand this may apply to people who, in the last three months, have been treated with Mavenclad or Lemtrada, or have had stem cell therapy (AHSCT). For those people who have been treated with Mavenclad or Lemtrada more than three months ago but less than six months ago there may be more variation. Some MS teams may advise shielding for these people, based on other risk factors, whereas some teams may advise self-isolation.
More detailed guidance and answers to likely questions around this can be found on the Government website.
People who need to shield should have been sent a letter advising them of this. There is a lot of information available to individuals who need to shield on both the Government website and the NHS website and you should direct patients to these sites if they have specific queries.
People can only be advised to shield and individuals have a right to decide whether or not to take the advice and whether or not to shield.
People with MS who fall outside of these groups may also receive a letter advising them to shield or self-isolate. This may be due to MS teams taking other factors into consideration, such as their white blood cell (lymphocyte) count, EDSS or other health conditions people may have that make them more vulnerable (e.g. severe asthma). In some instances GPs have sent out letters to people with MS with advice that is not necessarily in accordance with that which the MS Neurologist would have given and MS teams may need to contact these people separately to discuss the rationale for shielding or not with them – ensuring of course that there are no other risk factors beyond MS and its treatment that they are unaware of.
People who need to shield should also be registered on the Government website to ensure they can access the help and support they need; individuals are able to register themselves if they need to.
Information about the process of informing, recording and supporting people advised to shield, including specific guidance for Hospital Trusts, GPs and other organisations, can be found on the NHS Digital website.
Some of my patients are struggling to get food and supplies – what support can they get?
There are many people who do not have their own local support networks and who are finding it difficult to get out to the shops etc. – even if they are able to leave the house. It can also be very difficult for people to get delivery slots with the supermarkets which adds to people’s concerns and frustrations.
There may be local community groups which have set up and who will gladly help out people who are unable to get out themselves – a local online search should find any such groups who will be happy to help. The Covid Mutual Aid website is a good place to start your search.
Failing that you can make a referral to the NHS Volunteers programme and they will allocate a volunteer to pick up shopping, prescriptions etc. and can also allocate someone to give the individual a ring to make sure they are OK.
Is there any help for people with financial problems?
Some people may also be running very short of funds - particularly as they wait for Government aid to kick in - there are organisations who can help in the short term:
Turn2us will provide grants of £500 to people who really need it - these do not need to be paid back and ensure people have enough money for immediate bills and food whilst they wait for other benefit payments etc. to come through.
Credit Unions can also be a useful source of short term loans at reasonable rates and people can find their local credit unions here.
For people who need support to manage their debts then Citizens Advice is the best place to start. There is more information available on the Citizens Advice website.
How can I look after myself as well as my patients?
So many of us are feeling worried, anxious (not to mention exhausted!) right now and it is very easy to lose sight of your own needs when you are so busy trying to look after everyone else – at home as well as at work. However looking after yourself is more important now than ever – not only physically but also your mental health. There is lots of help and support available as well as lots of useful suggestions and ideas for ways in which you can keep well.
Sue Tibbles, MS Specialist Nurse in Coventry, has put together her Top 5 tips for staying well and looking after your mental health which you can read on the MS Trust website.
The NHS has developed the Every Mind Matters website, which is available to anyone to access and gives lots of ideas and suggestions for how to look after yourself both physically and mentally. It allows you to create a personal plan which you can then use each day. This is also a site you could suggest to people with MS who contact you in need of support for their general well-being as well as friends and family.
The NHS have also provided free access to various wellbeing apps for NHS staff – at least until the end of 2020. Visit the NHS Employers website to learn more and download the various apps which include Unmind, Headspace and Sleepio.
A treat now and then can also do wonders for morale and there are various offers available to NHS staff at the moment. NHS Offers lists those currently available – enjoy! As well as offers on different types of treats it includes the latest information on how NHS staff can best access supermarkets, transport and accommodation if needed.
Where can I get more information about the care and treatment of people with MS during the pandemic?
This is a constantly evolving area and we are learning all the time, so advice and guidance is also changing all the time. One excellent resource that is easy to access are the Neurology Academy webinars which have been running since late March. You can view the webinars by clicking on this link (opens in an external window). You can view all the webinars which have run to date and also register for upcoming webinars which are listed on the same page.
The MS Trust, MS Society and Shift MS are all working hard to keep our information and guidance up to date and relevant. The MS Trust Health Professionals Covid page and their information for people with MS are updated regularly. Follow the HP Twitter feed for all the latest information – and watch out for Covid-19 related blogs written by different health professionals which will be added to the website over the coming days and weeks.
If you would like to write a blog for us and share your experience of working with people with MS during the pandemic please email email@example.com
How can the MS Trust help?
Support for Health Professionals
The MS Trust Health Professionals team are here to support you as always. If you need advice or guidance on collecting and presenting evidence to support a specific issue locally then let us know and we will do our best to help. Likewise if you have any queries about Conference, Bursary applications or Development Module you can contact us.
The most direct way to contact the Health Professionals team at this time is via email on firstname.lastname@example.org and we will aim to get back to you the same day.
MS Trust Information service
During this unprecedented situation, do remember that the MS Trust Information Service is still running. It’s not a replacement for a dedicated MS Nurse, but you can direct your patients to us for evidence-based information, and we will support them to find answers to their questions. We can send out our books, leaflets and newsletters directly to people with MS, and they can also contact our Enquiry Service for a call back or email in working hours.
We're here for everyone affected by MS, and that includes the teams caring for MS patients. The MS Trust website continues to provide a wealth of evidence based, up to date information about every aspect of MS – not just the coronavirus, and is there as a resource for health professionals as well as people living with MS.
For the Enquiry Service, we recommend using email@example.com, or leaving a message on the Freephone answerphone 0800 032 38 39.
For publication orders, you and your patients can use firstname.lastname@example.org, to get resources sent out directly where they are needed.