6th September 2018

In attendance: Norma Y, Dick & Hazel LZib L,  John & Margaret I, Tim & Francis W, Angela D, Carolyn G, Ann R, Diana W, Terry G plus Kate A as our newest member.

Agenda items

Apologies: received fromSue C, Rod C, Brian & James L. And a welcome extended to our new member Kate A.

Matters arising from the minutes of the 3rd May meeting – There were none

Guest speakerDick welcomed Danielle Adams a Principal Clinical Pharmacist with the HPFT based at Kingsley Green. Prior to the meeting a series of questions were sent to Danielle.

The questions sent prior to the meeting for Danielle to answer during her presentation were:

  • Is this particular medication the right one for a this particular condition and how long before  it takes effect?
  • How do I know the medication dosage is at an acceptable level – is it arrived at by trial and error?
  • Is the dosage strength likely to cause side effects and what are the dangers and what to look out for?
  • I can’t trust my loved one to take their medication regularly or safely as prescribed what are the options?
  • What to do if the medication seems not to be working anymore?

More specific questions were:

  • Does Risperidone have a recognised role in resistant depression and are the side effects dose related?
  • Can the expected effect of the medication be negated or enhanced by smoking, taking drugs or alcohol and in what way?
  • What is a realistic role for carers (untrained in pharmacology) in helping our loved ones to continue taking their medication:
    • That leaves them feeling unwell?
    • Can avoid serious mishaps and unwanted side effects?

With the clear understanding that Danielle would be unable to answer any specific questions about the individual therapy of a particular patient, she began her presentation.  Unfortunately, without a projector Danielle’s the slides could not be shown. So for simplicity they are included here but only in their textual content.

Slides:

1 What is a drug?

A drug is something that is taken into the body and changes the way the body works.

2 What is a medicine?

A medicine contains a drug in a specially prepared form to: –

  • Cure a disease / illness
  • Prevent a disease /illness
  • Treat the symptoms of a disease/ illness

3 Medicines optimisation 

A patient centred approach for improved patient outcomes with aligned measurement and monitoring

Principle 1 – Aim to understand the patient’s experience

Principle 2 – Evidence based choice of medicines

Principle 3 – Make medicines optimisation part of routine practice

Principle 4 – Ensure medicines use is as safe as possible

4 Generic vs. Brand names

  • Majority of medicines have 2 names – one generic and at least one brand
  • Can be confusing as same generic can look different according to the manufacturer
  • For the vast majority of medicines a patient may receive different brands when a new supply is dispensed by pharmacist
  • For a few specific medicines it is very important that the same brand is dispensed each time for the patient eg lithium, some medicines to treat epilepsy

5 Making decisions about medicines

  • Good quality medicines information is required to:
    • Facilitate shared decision making
    • Empower carers to feel included in the medicines optimisation process
    • Enhance the support that carers can give around medication
    • Enable informed consent

6 The medicines process

  • Prescribing
  • Dispensing
  • Administering / supervising self-administration
  • Monitoring and feedback

7 Prescribing in the community

  • Doctors and dentists prescribe
  • Accredited nurse and pharmacist prescribers (other practitioners in future)
  • FP10 prescriptions
  • Private prescriptions

8 Monitoring medication

  • Monitoring involves observing the service user to determine if the medication is working, being used appropriately and not appearing to cause harm
  • Report any concerns
  • Pay particular attention when starting new medicines and changes in dosage.

9 Information about medicine

  • Community teams
    • Pharmacy input within HPFT is currently under review. Plan is to develop medicines review clinics within the community teams
    • Medicines information is available from your local community pharmacy ( local Chemist). You can arrange an appointment for a Medicines Use Review (MUR)
    • Many GP surgeries are now employing pharmacists. Check with your local surgery to see if you can make an appointment for a medication review
  • Medication information leaflet in the medication packet medicines.org.uk
  • Printable patient medicines information leaflets available at choiceandmedication.org.uk . Also available in easy read formats. Information only for psychotropic medicines (mental health medication)
  • For NHS Choices http://www.nhs.uk
  • Royal College of Psychiatrists public website http://www.rcpsych.ac.uk/expertadvice.aspx
  • MIND http://www.mind.org.uk/information-support/drugs-and-treatments/

10 The benefits of taking medicine

  • Remember that finding the best medicine may be a bit of “trial and error”. Medicines may have to be changed if they don’t work well.
  • When taken in the appropriate way medicines can
    • Make a person feel well
    • Make a person healthier
    • Stop a person getting ill (relapsing)

11 Where do we get medicines from?

  • Prescription medicines are usually dispensed by pharmacists and pharmacy technicians at a community or hospital pharmacy
  • OTC medicines can be bought at a community pharmacy, supermarket, petrol station and over the internet – remember if you would like advice please visit the community pharmacy
  • Herbal and homeopathic medicines can be bought from a health-food shop, a pharmacy or online

12 Classification of medicinal products

  • The legal ability to supply medicines is based on the categorisation of medicinal products
  • There are three categories:
  • GSL General sales list
  • P Pharmacy only
  • POM Prescription only

13 Smoking

  • Smoking can affect some medication – clozapine, olanzapine
  • Smokers will require higher doses of clozapine.
  • If a patient gives up smoking the clozapine levels may become toxic and the dose may need adjusting by the doctor.

This interaction is caused by the hydrocarbons in cigarette smoke and not the nicotine. Therefore nicotine replacement therapy is unlikely to be a problem

14 Key tips to get the most out of medication

  • Carry an up to date list of all medicines currently being taken and any allergies.
  • This list should include both prescribed medicines and any OTC medicines and herbal medicines.
  • Take this information to any healthcare / medical /dental appointments
  • Write down any medicines problems and take this to the appointment

15 How can I avoid medicines use problems?

  • Speak to your GP, psychiatrist, nurse or pharmacist
  • Many pharmacies are open 7 days a week and some are open in the evening? You don’t need an appointment to speak to the pharmacist.
  • Using one pharmacy if possible for all your regular medicines is helpful
  • Community pharmacies offer medicines use reviews (MURs) – this is an appointment to speak to your pharmacist to discuss all your medicines
  • Community Pharmacies offer a range of different services eg smoking cessation, home delivery of medication – Ask your local pharmacy what services they can offer

16 Key questions to ask about your medication

  • When medication in started, changed or reviewed at appointments you may wish to consider asking the following questions:
  • What’s the name of the medicines and what is it for?
  • How and when do I take it and how long to do I take it for?
  • What side effects can I expect and what should I do about them?
  • What shall I do if I miss a dose?
  • Does the medicine need to be taken regularly or just when required?
  • When should I expect the medicine to begin working?
  • Do I need to take this medicine with food?
  • Where should I store the medicine?
  • Do I need to avoid any medicines, foods or alcohol?
  • Is there any additional printed information I should read?

17 Miscellaneous issues

  • Covert vs dysphagia (swallowing difficulties)
  • De-prescribing
  • STOMP (stopping the over prescribing of medicines in people with learning disability and / or autism)
  • New medicines (local decision-DTC, area prescribing committee-HMMC, NICE technology appraisal – 3 months to implement in trust formulary)
  • Complementary medicine

Upcoming speakers

Discussion took place about which questions we might ask our next speaker Chris Lawrence (Chairman of the Trust).  His last comment to us at a previous meeting was the need for investment in Social Care. It was suggested that he expand on this but the consensus was that we should not. Instead we should ask him to follow up on the Trust’s work over the last year highlighting performance in those areas of strengths and weaknesses he spoke about last time.

Additionally, to ask him to enlarge on the latest CQC assessment where “Excellence” was achieved in the area of Learning Difficulties but overall the Trust only achieved “Good” and not the “Great” they were aiming for.  In particular to ask him to share why the 136 suite, given significant investment in recent years, did not fare better.

While we agreed that we could also ask Chris Lawrence about recruitment for current vacancies, it was thought that we should save that to ask Jane Padmore (Head Nurse) , our speaker in November, to explain why vacancies at most skill types and levels remain significantly high and to explain how that has affected delivery of services.

Discussion included how Social Welfare for those with enduring illnesses, as delivered by both the Herts County Council and the Trust might also be a theme for our speakers to address as there were examples where their relationship is not properly joined up leaving people to fall between the gap and therefore not receive the help that they need.

Dick L. suggested that we should keep the theme of “Accountability” in mind when dealing with the Trust.  Ie. To clearly establish just who is responsible for what in the numerous good and bad performance issues that occur.

Dick L. proposed that Louise Cant of the Trusts North West Wellbeing Team would be a willing and interesting speaker.  However, having spoken to her she could only attend a group meeting during the day.  Accordingly, Dick was going to suggest she speak at Rod’s group who meet at the Hemel Hempstead Wellbeing Centre and this group’s members be invited to attend.

Any Other Business

Francis W. reported the she had received a positive response for her application to Skipton Building Society for funding (see App 1) that stated that we had beaten some 720 other groups to get on to a shortlist. The funding decision will be arrived at by counting the on-line votes accumulated by each group in the list.  Accordingly, we are asked to spread the word widely, including asking family and friends, to request that they vote for us. If you haven’t yet voted please do so using detailed steps below or go to the link provided by Kate A. at the bottom which is that bit easier.

1             Go to www.skipton.co.uk (ctrl +click to follow link)

2             Click on “Grassroots giving” (NB I struggled to find this reference at this point and had to search for it)

3             Click on “2018 shortlisted groups”

4             On map click on “East of England”

5             Click on number 4 for our story

6             Go to bottom of the page enter your email address and click on vote for number 4 – (our group)

  1. To read our story just click on number 4.

Kate A, has suggested this link https://www.skiptongrg.co.uk/apply-for-funding/2018-shortlisted-groups/east-of-england/#apply-map which takes one directly to the map as in step 4 above

Kate A. has also suggested that she could use her Facebook account to put the details on the Hemel Community forum. This was agreed. Dick L. stated that he had already passed the details to the Trust and to Carers in Herts.

The Christmas Dinner – Dick L. reported that Rod had booked it for the Plough, at Leverstock Green on the evening of the first Thursday in December.

Dick L. spoke about his annual Quiz night on the 6th October at Victoria Hall Tring. This, it is hoped, will contribute some £500 to group funds. The entrance fee per person is £5 for which they will receive (Chicken & chips + pudding + all drinks + first raffle). There will be a second raffle which will be extra.

Dick L. can fill one table of 6 people and it is hoped that group members can provide at least another 6 people and preferably another 12.

Names agreed so far are for the first 6 are Tim W, John I, Terry G, Rod C, Rod U.

Possible others –Sue C. Carolyn & Ian G, Angela & Steve D

Feed-back from members representatives attending external meetings since May

Due to an extended AOB, this item was agreed to be delayed until the next meeting

Date of next meeting – 4th October 2018

App 1

Frances’s application to Skipton – (pictures from our web site not included here)

Your story

We are a support group of carers who look after someone close with serious and enduring mental illness. We offer respite, friendship, support and encouragement, as well as information built on our lived experiences.

Group introduction

The circumstances of mental illness can be bewildering, isolating as well as carrying a stigma. This affects not only those with the illness, but also those who are closest such as family members, often with little or no help or support. This can often affect the mental health of carers who are often the only source of support for those affected.

Our group began 25 years ago to give friendship and respite to those caring for loved ones with serious and enduring mental illness such as schizophrenia, bi-polar, personality disorders and other complex mental disorders.

We meet monthly to socialise and often have speakers from various services to advise on such matters as finance and benefits as well as psychiatric services.

We offer respite through our annual Christmas dinner and a summer outing as well as other social activities.

Members have described the group as a lifeline in an unrelenting situation and have been able to take their caring role more positively.

Some of our earlier members have represented our group as trustees and advisors to various organisations involved in mental health and have made some small but positive changes in health care.

Many members have become firm friends and all agree that our support group needs to reach out to those in similar situations so more people can benefit .

The isolating effect of caring for loved ones means reaching out to carers can be challenging, and therefore we plan to leaflet and provide posters to all GP surgeries, clinics, hospital waiting rooms, libraries etc., in order to make people aware of our existence and invite them to engage with us.

How would this funding have an impact on your community?

We are mainly a self-funded group raising the small amount we need with monthly raffles, quiz nights and occasional donations.

We would use the award to help pay for the cost of designing and printing a large amount of leaflets for our campaign to reach out to those who would benefit from our group.

“When there is little help for those who care, we look after and care for each other. A little goes a long way.”

For more information visit: caringforcarersindacorum.com