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Written by Janet Hayden - Lead Myeloid Clinical Nurse Specialist - King’s College Hospital

MDS specialist nurse Janet Hayden gave two talks at our recent London Patient meeting at King’s College Hospital.

The first one was a report about the MDS International Symposium in Copenhagen, which she attended thanks to a travel grant from MDS UK. The symposium included a 1 day nurse programme, attended by nurses from several countries.

Janet says:

It is important that those of us lucky enough to attend these events get the opportunity to share that learning and knowledge back at base camp and especially to the MDS patient community who may not readily have access to some of this knowledge via other forums . So I have attempted to summarise some of these main points which may be of interest to you.

Janet says:

The program this year was heavily scientific. The presentations showed the ever increasing complexity of both evolution of MDS and the diagnosis. it is clear that the science has moved on tremendously in the past decade. The list of somatic mutations acquired in MDS is ever growing and the understanding of which of these genes does not respond or does respond continues to evolve. Challenges remain due to the heterogeneity (patients having more than one acquired mutation) that presents major challenges for treatment strategies.

A large team from Denmark presented their news and developments for patient services. These services included a Chemotherapy at Home, or mobile chemotherapy option, enabling patients to lead as normal a life as possible, whilst receiving their treatment. It also covered a patient peer to peer support scheme, as well as an exercise regime to help boost energy for AML and MDS patients.

Chemotherapy at Home scheme at King’s College Hospital

Her second talk introduced the Chemotherapy at Home scheme that will soon be in place at King’s College Hospital.

Click here or on the image to read and download Janet Hayden's presentation.

The Benefits for Patients

From the patient point of view there are a number of patients who struggle with travelling and travel costs. They experience long waiting times, increasing time off work for the patient and their carer.

In addition, the fact that they do not need to stay at the hospital environment while receiving treatment reduces their risk of infection so patients may choose chemotherapy at home to avoid the regular trips to the hospital.

The Benefits for the NHS

Moving care out of a hospital setting, is an important goal for the Institute’s and the broader NHS. There is evidence that it improves patient experience and quality of life, while reducing NHS burden and costs. As it releases capacity from busy outpatient clinics the scheme will help to improve NHS ability to deliver effective care.

The scheme has proven to be the preferred option by patients in Birmingham and other areas. Both King's College Hospital NHS and Guy's and St Thomas' NHS Foundation Trust staff are very supportive of the initiative, citing the positive impact it could have on patients.

Chemo at Home could be financially sustainable, and cheaper for the Institute than traditional clinics.

Chemotherapy at home in Spain

Would like to speak to KCH MDS nurses Janet Hayden or Geke Ong?

As ever, if you would like to speak to KCH MDS nurses Janet Hayden or Geke Ong, they are available during our MDS meetings at King’s.

These meetings are free and open to all patients in the UK.

The next London meeting is planned for 18th November. Click here for details of our next London Meeting.

Click here for dates and venues for all our patient meetings in the UK.

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