COVID 19 and WHY MOST LYMPHOEDEMA SERVICES MAY BE SUPENDED

[buddlia12]

At the time of global, national and local crisis it can feel very scary for us all especially if we are living with a life long condition such as lymphoedema/lipoedema.

Lymphoedema Services have had to make some very very difficult decisions and most have been temporarily suspended. Independent Lymphoedema Practitioners have probably by now, also suspended their work, and often sole income.

WHY?

Many services operate from, hospices, hospitals, health centres. All non urgent medical face to face care has been suspended in most of these facilties.

1.To protect patients and staff from spreading the virus. Reducing social exposure and contact as much as possible.

2.To maintain a non contaminated environment for re-opening time

3.To enable all clinical staff to be re deployed, into more critical care. In the case of hospices this is to focus on In patients and those who are dying at home of terminal illness and who need nurses to go out to them. ( exposed to the risk of C.19)

4.To enable logistical decisions and functions to continue, through remote working. (Ensuring medical equipment and medicines are still supplied, or appealing for donations of PPE's etc for their teams, and ensuring safe working practices are in place for staff and patients being treated.) Hospices, don't get supplies if not NHS

5. To ensure that they have enough clinicians to care for the most urgent patients, even as staff begin to self isolate because they have COVID19.

What about Independent Practitioners. Surely they can still treat patients?

Well no... by now we should all be socially distanced, only making journeys outside home for essential shopping or essential working.

We should not be visiting people's homes, even if all parties feel well... covid 19 is invisible, stays on contacted surfaces for days, including clothing, linen, towels.

Likewise we should not be receiving patients into our work spaces, especially when that may be in the Practitioners home.

The only way to stop C19 is to keep away from others . That 1 face to face to check someones hosiery, could be the instance when either party contract C19 and worse still C19 is then shed into the clinic/treatment room/building, putting everyone else at risk.

So while it is extremely difficult living with lymphoedema especially if it is not well controlled, or newly diagnosed, or complex...... not spreading COVID19 takes absolute priority . As soon as it is safe to return to `normal' please be assured that the teams who are currently working tirelessly in their re deployed roles, will also work tirelessly to get clinics and services back on track.

Do use LSN for support. And your clinic, therapist will likely also offer telephone or email advice.. They may also offer skype consultations/advice calls.

We are in this together and we are still there for you all.

Please keep well, keep safe. Stay home.

[Perido]

Thankyou buddlia for clarifying the situation

[buddlia12 in reply to Perido]

Hi Perido. I know it's a really difficult time for everyone who lives with lymphoedema, and probably even more worrying as services and therapists stop face to face treatments. But do be assured that along with LSN and other support networks, Lymphoedema Practitioners and Therapists are still keen to offer you support and advice via telephone and email. Wishing you well.

[Perido in reply to buddlia12]

I've just received a call from my lymphoedema clinic to say that all the staff are to be redeployed. I was informed there won't even be telephone or e mail advice. I asked if the clinic could provide roll on glue and I was told to go to my GP or buy from the manufacturer. I got the same reply when I asked if a repeat order for my stocking could be arranged. I feel deserted.

[buddlia12 in reply to Perido]

Hi Perido, so sorry to hear how despondent you're feeling. Yes many clinics have had to redeploy staff to work in the community, and hospitals where the need is most felt.

Re glue: many clinics are unable to supply non prescription items such as skin glue or kinesiology tape. This is because funding for Lymphoedema services is limited, especially where part of non NHS Hospice services. So it is commonplace for patients to self purchase these items directly from the manufacturer. And the companies do manage to send out fairly promptly. Sometimes you can order online, sometimes by telephone.

Re hosiery. If your garments are on prescription/ a prescribable product, again it is commonplace for services to have requested ongoing repeat prescriptions for these items , when lymphoedema is stable. So if your GP has prescribed in the past, then yes I would expect you to be able to request more, as part of your self management, strategies.

Try not to feel abandoned. At present C19 is the biggest health threat to us all and our fantastic lymphoedema nurses, physios, OT,s have to answer the call for help elsewhere during the crisis. Once things are able to re start, be assured they will be the first to set clinic appointments up and running.

If your hosiery is made to measure, and on prescription, you may be able to contact the company to obtain the specific codes your prescriber will need to put on the prescription. You could also use the DAYLONG service which will post your garments directly to you.

Hope this helps. Get back to me if not....take care..