One of the things that has jumped out at me in the time I have been hosting our Virtual Support Groups and in my short time as the WMUK Patient Support and Information Manager is the very clear difference there is in our care pathway as a WM family. It seems that some of us, (me included) are geographically fortunate enough to be living in a region where there is a WM Specialist in the Haematology Dept, in my case Royal Bournemouth and Christchurch Hospital, where we can expect to receive the very best available and current care. For me it helps that I have Dr Helen McCarthy, one of our WMUK trustees, running the WM clinic here so I am absolutely sure that my care pathway is very much on the right track.
Sadly, I am finding that for some of you this is not the case. I am hearing reports of people in our WM family who are not being seen by WM experts and who are being left somewhat ‘in the dark’ with regards their onward treatment plan and prognosis. Indeed, some are reporting that they have no confidence in the Clinician they have been allocated to.
This makes me very sad and I really feel for you if you are one of our family in this position.
However, there is a solution to this dilemma. It does however go against our very British attitude towards upsetting the people we are inclined to respect. It is referral for a SECOND OPINION.
In essence it is very important for you as a patient to take control of your condition and have a say in how you wish to be cared for. Put simply you are 100% entitled to seek a second opinion. Having spoken to Clinicians about this please believe me when I say that your Doctor will not be offended or put out by you asking for a referral.
However, before you do this, consider the following:
Why might you want the referral? Are you not getting enough information about the disease/ life expectancy/ treatment options? If not, have you actually asked your Clinician?
You may want a second opinion not just because you have a non-specialist, but also everyone has different styles and you need to be comfortable and confident with the doctor who is seeing you as this will be a lifelong partnership. I remember the first time I met Dr Helen her first question was did I want to be called Bob or Robert and that I was to call her Helen because she told me were going to be partners at her clinic for life!! Just that conversation alone made me realise I was in the best place for my WM journey. So occasionally Clinicians do get referrals from other specialist centres and vice versa because of that relationship.
So how does it work? Well, you can either approach your Clinician and ask them to refer you to a WM specialist or if you know of a WM specialist who you would like to see you can approach them through their Medical Secretary and ask if they will see you. If the latter you still need to then get your GP or Specialist Clinician to refer you on.
It is possible to have a shared care option, where you still see your local doctor more regularly, but perhaps see the tertiary centre once a year so that they are involved in your care and can be involved in the discussions when treatment is required.
An example of this is a WMer I met at the last Patient/Doctor summit in London who lives in East Sussex and who was not happy with their treatment who contacted Doctor Helen here in Bournemouth and about six weeks later I was having a coffee with them in the Hospital canteen after they had seen her. They were then put straight onto a bespoke treatment regime and are now, like me, on three monthly checks, still seeing their local Clinician but with Dr Helen watching on. This, I know, totally changed this person’s outlook on the condition and how best to live with it.
I know there are many of you who have successfully done this and some of you travel long distances (pre-Covid) to see your chosen Specialist or their team.
So the advice is, if you are unhappy with your care pathway, ditch that British reserve and take control by finding and getting referred to a WM Specialist for that Second Opinion!!
Visit us at www.wmuk.org.uk for advice and information or email myself and Kat at support@wmuk.org.uk and we will try and help you.
You can also join us on Facebook at WMUK Community Support Group or follow us on Instagram at wmuk_info
Join me next time when I will be talking about a visit to the PROMs.
Bob
