Blog – Page 3

MKCPP bi-monthly meeting Tuesday March 10th – CANCELLED re COVID-19

March 9, 2020 by Suzan Leave a Comment

Please note that the MKCPP’s next meeting, as scheduled for March 10th, 2020, has been cancelled due to fears regarding some members being obliged to attend the hospital during the COVID-19 crisis, as they have potentially compromised immunity.

Of course we will keep you posted and hope that our May meeting can go ahead as planned.

In the meantime, some notes from a North American virologist who has some good advice

A cousin of mine in Canada shared the following email and it strikes me as a good all-round piece of advice. Seems like the writer knows his corona viruses…Suze.

Dear Colleagues, as some of you may recall, when I was a professor of pathology at the University of California San Diego, I was one of the first molecular virologists in the world to work on coronaviruses (the 1970s). I was the first to demonstrate the number of genes the virus contained. Since then, I have kept up with the coronavirus field and its multiple clinical transfers into the human population (e.g., SARS, MERS), from different animal sources.

The current projections for its expansion in the US are only probable, due to continued insufficient worldwide data, but it is most likely to be widespread in the US by mid to late March and April.

Here is what I have done and the precautions that I take and will take. These are the same precautions I currently use during our influenza seasons, except for the mask and gloves.:

1) NO HANDSHAKING! Use a fist bump, slight bow, elbow bump, etc

2) Use ONLY your knuckle to touch light switches. elevator buttons, etc.. Lift the gasoline dispenser with a paper towel or use a disposable glove.

3) Open doors with your closed fist or hip – do not grasp the handle with your hand, unless there is no other way to open the door. Especially important on bathroom and post office/commercial doors.

4) Use disinfectant wipes at the stores when they are available, including wiping the handle and child seat in grocery carts.

5) Wash your hands with soap for 10-20 seconds and/or use a greater than 60% alcohol-based hand sanitizer whenever you return home from ANY activity that involves locations where other people have been.

6) Keep a bottle of sanitizer available at each of your home’s entrances. AND in your car for use after getting gas or touching other contaminated objects when you can’t immediately wash your hands.

7) If possible, cough or sneeze into a disposable tissue and discard. Use your elbow only if you have to. The clothing on your elbow will contain infectious virus that can be passed on for up to a week or more!

What I have stocked in preparation for the pandemic spread to the US:

1) Latex or nitrile latex disposable gloves for use when going shopping, using the gasoline pump, and all other outside activity when you come in contact with contaminated areas.

Note: This virus is spread in large droplets by coughing and sneezing. This means that the air will not infect you! BUT all the surfaces where these droplets land are infectious for about a week on average – everything that is associated with infected people will be contaminated and potentially infectious. The virus is on surfaces and you will not be infected unless your unprotected face is directly coughed or sneezed upon. This virus only has cell receptors for lung cells (it only infects your lungs) The only way for the virus to infect you is through your nose or mouth via your hands or an infected cough or sneeze onto or into your nose or mouth.

2) Stock up now with disposable surgical masks and use them to prevent you from touching your nose and/or mouth (We touch our nose/mouth 90X/day without knowing it!). This is the only way this virus can infect you – it is lung-specific. The mask will not prevent the virus in a direct sneeze from getting into your nose or mouth – it is only to keep you from touching your nose or mouth.

3) Stock up now with hand sanitizers and latex/nitrile gloves (get the appropriate sizes for your family). The hand sanitizers must be alcohol-based and greater than 60% alcohol to be effective.

4) Stock up now with zinc lozenges. These lozenges have been proven to be effective in blocking coronavirus (and most other viruses) from multiplying in your throat and nasopharynx. Use as directed several times each day when you begin to feel ANY “cold-like” symptoms beginning. It is best to lie down and let the lozenge dissolve in the back of your throat and nasopharynx. Cold-Eeze lozenges is one brand available, but there are other brands available.

I, as many others do, hope that this pandemic will be reasonably contained, BUT I personally do not think it will be. Humans have never seen this snake-associated virus before and have no internal defense against it. Tremendous worldwide efforts are being made to understand the molecular and clinical virology of this virus. Unbelievable molecular knowledge about the genomics, structure, and virulence of this virus has already been achieved. BUT, there will be NO drugs or vaccines available this year to protect us or limit the infection within us. Only symptomatic support is available

I hope these personal thoughts will be helpful during this potentially catastrophic pandemic. You are welcome to share this email. Good luck to all of us!

Cancer & Beyond MK: MKCPP brings GP practices and Hospital cancer care together

March 1, 2020 by Suzan 2 Comments

As you know, increasingly the whole picture of living with and beyond cancer is becoming a critical issue, especially given that cancer patients being discharged back into the community to continue living with and beyond cancer often have to jump over a large gap – between secondary and back to primary care.

Cancer and Beyond from the Milton Keynes Cancer Patient Partnership — “Topping out” our new Cancer Centre in Milton Keynes where our MKCPP member Linda Wilson was an honoured guest, albeit in wellies, a high-vis jacket and crash hat…

We in the MKCPP have been flagging up this problem for nearly seven years now. It is gratifying to see that many other localities, NHS and other groups as well as charities (including Macmillan), are arriving at similar conclusions.

In 2016, Angela Sheldrick, Breast ANP at MKUH was seconded by Macmillan and NHS England to manage Macmillan’s generic Living With & Beyond Cancer project in our locality to move more care, and especially post-treatment care, onto a more workable basis in closer partnership with primary care. This move was welcomed by us all in the MKCPP.

Cancer and Beyond: your way ahead

Now, the MKCPP is working on a local project named Cancer and Beyond: your way ahead to explore and facilitate delivery of help, advice, social networking and camaraderie to cancer and post-cancer patients and their families/carers … in our community, within the community, on a patient-led basis. After an initial survey to get cancer patient/carer feedback at local level, a pilot scheme started in 2016 with one of MK’s GP practices.

A preliminary informal workshop was held at the practice for cancer patients, carers, friends and family members, and was a resounding success, with many attendees keen to take the initiative further and form a micro-local cancer support group on the strength of this first meeting alone.

A further meeting – similarly packed to standing room only – proved to us that we’re on the right track. And a third meeting held in September 2017 proved its value beyond any doubt: nearly 40 people attended, with a packed space with standing room only. Many had been to the previous two meetings and were looking forward to more.

Another GP practice decided to host a pilot workshop along similar lines. This took place early in October 2017.

This meeting was equally well attended and at one point there was –again – standing room only in the meeting space.

Especially after the third successful group meeting at the first GP practice, other MK GP practices became interested in convening similar meetings. MKCPP members, along with local Macmillan representatives plus Angela and her team, decided to continue helping to roll these out.

The first of the 2018 meetings was a joint group from the two local (Bletchley) practices

Because the previous meetings had been so successful, we decided not to try cramming everyone into the meeting rooms and/or reception areas of the two local GP practices, but instead to look elsewhere. At a meeting of the Cancer & Beyond Steering Group we were lucky enough to benefit from one MKCPP member’s strong connections with Bletchley/MK College – which kindly offered us accommodation for our meeting on March 8th.

This meeting attracted an audience of more than 50 patients, carers and other interested parties who enjoyed a meeting theme of “exercise with and beyond cancer” at the Bletchley campus of MK College … with presentations and a panel discussion facilitated by the MKCPP with speakers as follows:

Willen Hospice physiotherapist Nicky McKinnon
Dr Andy Potter (GP, Whaddon Medical Centre)
Dr Adam Staten (GP, Red House),
Macmillan ANP Fay Grech-Marguerat
Macmillan ANP Sam Timmins

Further joint workshops have become a regular feature on the MK Cancer & Beyond calendar ever since that inaugural session. Four more are scheduled for 2020, and other GP practices are planning to follow suit.

Where next for Cancer & Beyond?

Interest also has been expressed by adjacent NHS / CCG GP practices in holding Cancer & Beyond meetings, including a GP practice which straddles the border between MK and West Central Bedfordshire. The Practice Manager concerned attended a recent meeting at Bletchley College and is now planning their pilot event for 2020.

Two further practices in MK have shown interest and are planning pilot events later in 2020.

At the same time, interest has been expressed in these meetings by patient representatives involved with a number of other West Central Bedfordshire GP practices, and we hope that the initiative will spread across there into the MK/Bedford/Luton & Dunstable STP as well as the East of England Cancer Alliance, both of which border on to Milton Keynes.

In addition we hope the initiative will spread to our other neighbouring regions including the Thames Valley Cancer Alliance.
And we hope – perhaps with the help of a huge, brilliant, national cancer charity that should remain nameless – our initiative might one day go nationwide.

For more information on our Cancer & Beyond workshops please drop us a line on info@mkcpp.org.

New buddy project for Milton Keynes cancer patients

February 9, 2020 by Suzan Leave a Comment

We’re all thrilled to welcome Al’s Pals, a new charity in MK to provide ‘buddies’ for all cancer patients who love company and whose friends and family aren’t always available to share their journey with them on a regular basis.

Al's Pals new cancer charity in Milton Keynes — “It is his legacy to have a cancer buddy scheme like this,” says Al’s daughter Suzanne

Suzanne Brown, whose late Dad Alan Dumbell was receiving ongoing cancer treatment at MKUH, launched this service in his memory.

Why a cancer ‘buddy’ scheme was – and is – needed in Milton Keynes

Alan noticed that throughout his treatment as much as he was surrounded by his loving family he still felt very lonely and lost at times and he often discussed having a ‘buddy’ to support him and help him where he felt things were missing. [Read more…]

World Cancer Day 2020: how to write to someone who has cancer

February 4, 2020 by Suzan Leave a Comment

Cancer: what to write to someone who it — You can still live well while going through cancer treatment

by Suzan St Maur

Cancer is a word that strikes fear into the heart of anyone diagnosed with it. These days, however, it certainly does not have to be a death sentence; more and more cancer patients are surviving either to full-term life expectancies or for many good years they wouldn’t otherwise have had, even as little as a decade ago.

I’m a 2 x cancer survivor (so far) and am still very much alive and kicking, and have every intention or remaining so until I’m well into my dotage. Thankfully, increasing numbers of my friends and co-cancer patients are looking towards a similar future.

However, when we find out a friend or relative has cancer and we want to drop them a line to show how much we care and support them, it’s essential to realize that it’s a very sensitive time, and you need to recognize the following key points to help you write. [Read more…]

Exciting new amenities for Milton Keynes cancer patients, connecting with the community, and more from the MKCPP

February 2, 2020 by Suzan Leave a Comment

Updated February, 2020.

Milton Keynes Cancer Patient Partnership — Topping-out ceremony of Milton Keynes’ new Cancer Centre. VIPs included MKCPP member Linda Wilson…

Closing the gap between hospital and community care for patients living with Cancer and Beyond

Increasingly this is becoming a critical issue, especially given that cancer patients being discharged back into the community to continue living with and beyond cancer often have to jump over a large gap between secondary and primary care. We in the MKCPP have been flagging up this problem for nearly six years now. It is gratifying to see that many other localities, NHS and other groups as well as charities (including Macmillan), are arriving at the same conclusion.

Back in 2016, Angela Sheldrick, Breast ANP at MKUH was seconded by Macmillan and NHS England to manage Macmillan’s generic Living With & Beyond Cancer project in our locality to move more treatment, and especially post-treatment care, onto a more workable basis in closer partnership with primary care. This move was welcomed by us all in the MKCPP (… especially as we had been asking about it for four years.)

Cancer and Beyond: your way ahead

Now, the MKCPP is working on a local project named Cancer and Beyond: your way ahead to explore and facilitate delivery of help to cancer and post-cancer patients in our community, within the community, on a patient-led basis. After an initial survey to get cancer patient/carer feedback at local level, a pilot scheme started in 2016 with one of MK’s GP practices.

A preliminary meeting was held at the practice for cancer patients, carers, friends and family members, and was a resounding success, with many attendees keen to take the initiative further and form a micro-local cancer support group on the strength of this first meeting alone.

A further meeting – similarly packed to standing room only – proved to us that we’re on the right track. And a third meeting held in September 2017 proved its value beyond any doubt: nearly 40 people attended, many of whom had been to the previous two meetings and who were looking forward to more.

Another GP practice decided to host a pilot meeting along similar lines. This took place early in October 2017.

This meeting was equally well attended and at one point there was standing room only in the meeting space.

Especially after the third successful group meeting at the first GP practice, other MK GP practices became interested in convening similar meetings.

The first of these 2018 meetings was a joint group comprising attenders from the two local (Bletchley) practices

Because the previous meetings had been so successful, we decided not to try cramming everyone into the meeting rooms and/or reception areas of the two local GP practices, but instead to look elsewhere. At a meeting of the Cancer & Beyond Steering Group we were lucky enough to benefit from one member’s strong connections with Bletchley/MK College, who kindly offered us accommodation for a meeting.

This attracted an audience of more than 50 patients, carers and other interested parties who enjoyed a meeting theme of “exercise with and beyond cancer” at the Bletchley campus of MK College … with presentations and a panel discussion facilitated by the MKCPP with speakers as follows:

Willen Hospice physiotherapist Nicky McKinnon
Dr Andy Potter (GP, Whaddon Medical Centre)
Dr Adam Staten (GP, Red House),
Macmillan ANP Fay Grech-Marguerat
Macmillan ANP Sam Timmins

Interest also has been expressed by adjacent NHS / CCG GP practices in holding Cancer And Beyond meetings, including a GP practice which straddles the border between MK and West Central Bedfordshire. More pilot meetings have taken place across MK and more are planned in 2020. The original joint meeting with the two Bletchley practices now has become a regular quarterly feature and is extremely well attended.

Interest has been expressed in these meetings by patient representatives involved with a number of other West Central Bedfordshire GP practices, and we hope that the initiative will spread across there into the MK/Bedford/Luton & Dunstable STP as well as the East of England Cancer Alliance, both of which border on to Milton Keynes.

In addition we hope the initiative will spread to one of our other neighbouring regions, including the Thames Valley and East of England Cancer Alliances and beyond.

New Cancer Centre opening this year – such an exciting move forward!

milton keynes university hospital cancer centre — Brand new Cancer Centre at Milton Keynes University Hospital

At long last Milton Keynes has a dedicated cancer building bringing all treatments together. There is even room for at least one linear accelerator (radiotherapy) machine which we hope we will have soon. To read the whole story about the project, click here …

East of England Cancer Alliance Patient Advisory Board

Recently Jaff (Secretary) and Suze (Chair) represented the MKCPP at an exploratory/preliminary conference in Cambridge with a view to setting up a Cancer Patient Advisory Board to work within the overall Cancer Alliance activities in the East of England. This has now worked through into a very interesting and potentially useful forum, and since its inception MKCPP representatives have attended all its meetings.

Although here in MK we still have a strong clinical relationship with Oxford/Thames Valley NHS region, in terms of the NHS’s STPs – Sustainability and Transformation Plans (affectionately known in some NHS circles as Sticky Toffee Puddings) currently MK is partnered up with Bedford Hospital and Luton & Dunstable Hospital. That makes sense in non-NHS geographical terms but does raise questions about MK having one foot in two different NHS regional camps.

Working Group: Patient Feedback Project

The Patient Journal (version 3) was being distributed to all patients with new cancer diagnoses at MKUH. MKCPP core members were attending the Macmillan Unit to chat informally with patients and carers waiting for appointments. This was in addition to distribution of the Journals, to offer patients and carers the chance to record their feedback verbally if they preferred that to writing it down.

Now, given that it seems patients and carers (perhaps understandably) are more inclined to give a “snapshot” view of their treatments, reactions, etc., we have devised a new and vastly simplified “MK Cancer Care Survey” folder which patients and/or carers can fill out themselves, but also can be used as a discussion document when our members chat informally with patients and carers in MKUH outpatients areas and elsewhere. This is far less intimidating than earlier incarnations, but all the same is designed to pick up on any problems.

With both the new and the previous versions, although the incoming information is obtained in informal and relaxed circumstances, key points from these conversations are recorded manually and fed back to Cancer Services within a tightly-structured, detailed and effective matrix. This allows any issues – particularly should they be serious issues – to be fast-tracked right up to top decision makers and lead to action plans for any appropriate improvements to be considered by MKUH – fast.

Several suggested improvements obtained via feedback from MKCPP surveys have been implemented, including the provision of free WiFi for everyone attending the hospital for cancer treatment, so helping patients and carers to keep in touch with their work, leisure and other pursuits online. MKUH Cancer Services are pleased to share the results of these exercises and share such information via “you said, we did” information within the MKUH Macmillan Unit and allied locations at the hospital.

Core members of the MKCPP are being DBS checked by MKUH Cancer Services, with a view to being allowed on to the wards and talk to cancer patients there, in addition to talking with patients in waiting areas and outpatients, etc. This will expand the MKCPP’s ability to pick up on any problems or other issues right away and feed back relevant information through the matrix described above.

Working Group: Children’s Cancer
Some time ago, Dawn Allen from the Henry Allen Trust agreed that it would be a good idea to implement a “Junior Journal” using Milly-the-cow for even greater effect for children with cancer in MK. We discussed creating a hygienically suitable “concrete cow” toy for young patients, and since then a prototype has been created by Hobby craft: a pack including a white and black Milly piggy-back (well, cowie-bank!) some paints and a brush. The MKCPP Working Group for this initiative is taking this forward in 2018.

Working Group: Sharing The Caring For Cancer in MK – Resources Directory
The fourth print run of Directories is being handed out now. Macmillan did not agree to funding this printing of the Directory, but MKUH Cancer Services kindly offered to pay so the revised Directory was been printed and published and is now “flying off the shelves,” as an MKUH HCP described it. (Please note the Directory is available at all times online here on this site and is updated as each new item comes in.) There is a PDF download facility on this website so anyone can access the Directory for their own use, to read on screen or to print out. Just click on the box at the top right of the page if you’re using a desktop or laptop, or at the bottom of the introductory text on your phone.

Working Group: Cancer awareness amongst ethnic groups in the community
A recent meeting attended by Jaff and Suze offered up a new lead into the Asian communities where, in particular, a lot of work needs to be done to increase symptom awareness and the earlier seeking of diagnosis and treatment. It is hoped that we can make significant progress with this during 2019, especially now that Macmillan have expressed an interest in helping us achieve that. Further investigation is being planned into other ethnic groups in Milton Keynes.

Working Group: Look Good, Feel Better
Huge thanks to Gail for being our liaison link with the LGFB Charity and making all this happen. Sadly Gail has stepped back due to pressure of her work, but has promised to return and help out at our workshops when she can. Thanks also to Sam and Fay for officiating on the part of MKUH as well as the Bosom Pals charity that provides much-appreciated refreshments. The workshops – which celebrate their six-year anniversary in Milton Keynes in 2020 – have proven so popular that despite LGFB putting on some extra workshops, all are consistently booked up for several months in advance. The workshops truly are a heart-warming experience for all concerned and demonstrate how co-operation among local charities like the MKCPP, Bosom Pals along with the NHS and Look Good, Feel Better can deliver amazing benefits for cancer patients and their carers whether at national or local level.

LGFB 1 - 3 — Our member Gail Spooner, who has been managing these workshops on behalf of Look Good Feel Better, hard at work with a patient

Data protection / GDPR compliance
We do not hold information about members of our group apart from email addresses. However to become compliant with data protection regulations implemented in May 2018, we have written and posted our own privacy policy.

MKCPP leaflet
The leaflet is still available from the Mac Unit. This one is branded as the MKCPP, not the NHS, and is A5 in format. As we are managing to recruit new members by personal referrals at the moment, the current leaflet focuses more on explaining to people what we do, and why. But this may change: we need more members willing to be active and spread the word beyond MKUH meetings. Watch this space.

Public Liability Insurance
At long last, we have been advised that to be on the safe side, we DO – in theory – need to have public liability insurance. However as currently we operate only within premises already covered by such insurance (i.e., mainly NHS) we’re OK. Again, watch this space.

MKCPP Website
The URL is www.mkcpp.org and as you can see it contains a lot of information. Please use this site to keep up to date with this Tracker, plus Diary Dates,and other relevant information which will be posted as blogs. If you have anything you would like to share on this site please send it along to info@mkcpp.org.