Carer Talk: MAC Clinical Research

At a recent Young at Heart session, we welcomed Rachel Metcalfe and her colleagues Kay and Rakesh from MAC Clinical Research, a clinical research company based at the Riverside in Thornaby, close to the Infinity Bridge. The team came to introduce their work and to talk about how local people living with dementia — and the carers who support them — can take part in research studies without having to travel far from home.

It was an open and friendly session, with plenty of questions from the room. This post is a summary of what was covered, intended as a resource carers can return to.

Who MAC Clinical Research are

MAC Clinical Research runs clinical trials on behalf of pharmaceutical companies — the studies that test whether a new medication is safe and effective before it can be approved for wider use. The team explained that every medicine on the market today has been through this kind of testing phase, a process that can take many years.

Their clinic is fully staffed by medically trained people, including doctors, nurses, study coordinators and clinical trial assistants. The point they returned to throughout was that safety comes first at every stage, and that participants are followed by a doctor or nurse the whole way through.

The current study

The specific trial that brought the team to the group is looking at a new medication to help with psychosis in people living with Alzheimer’s — one of the more distressing symptoms that can come with the condition. The team spoke honestly about how difficult Alzheimer’s is to live with, both for the person and for those around them, and about their hope that research can lead to better support and treatment in the future.

They were clear that this particular study is a significant commitment: it involves 14 visits over a 14-day period. They acknowledged openly that this will not suit everyone, and that whether someone is a good fit depends on their circumstances, their current medication, and what is safe for them.

How taking part works

The team talked the group through what taking part actually involves, step by step.

Registering your interest. The first step is simply to register on their database. This does not commit you to anything — it means the team can get in touch when a study comes up that might be a good fit.

Checking suitability. If you express interest in a particular study, Rakesh’s team go through the criteria with you, usually by telephone to begin with. Clinical trials have specific requirements, and the team stressed that if a study is not safe or not suitable for someone, they will not proceed with it. That is not a rejection — it simply means that particular trial is not the right one.

The first visit. If you go ahead, the first visit is a screening appointment. This includes a full health check — blood pressure, blood tests, ECG and similar — along with going through consent. Anything the team picks up that needs attention is passed straight to your own GP.

Ongoing visits. After screening, further visits follow as the study requires. Individual appointments are generally around two hours, though this varies by study.

A health MOT, whatever you decide

One point the team were keen to make is that everyone who takes part receives what they described as a full “health MOT”. The clinic works alongside your own GP, and if anything is flagged on their systems, they let your doctor know straight away. For some people, this thorough check is a reassuring benefit in its own right.

Practical support: transport, meals and compensation

Because MAC Clinical Research recruit locally, they are able to remove many of the practical barriers that can make taking part difficult.

Transport is provided for both the participant and their carer.

Meals and dietary requirements are catered for in-house, including for people with conditions such as diabetes.

Financial compensation is offered for both the participant and their carer — the team mentioned a figure of up to £1,500 for this particular study, which they said is not means-tested and not taxed. As always, the details will depend on the specific trial.

The team described it as a “one-stop shop”, with flexibility around timings too — appointments can often be arranged around work, including evenings and weekends where needed.

More than one study

A recurring message was that registering opens the door to more than just the current trial. MAC Clinical Research run studies across a wide range of conditions — including Parkinson’s, mental health, heart, diabetes and others — with new ones coming through regularly. Even if this study is not right for someone, being on the database means the team can get in touch when something more suitable comes up. There is never any obligation to say yes.

An honest conversation in the room

As often happens at our sessions, the talk opened into a wider and very honest conversation. Members of the group spoke about their own experiences of Alzheimer’s and dementia, both as carers and, in some cases, as people living with a diagnosis themselves. There was a shared recognition of just how relentless caring can be — as one person put it, it does not stop, day or night — and of how hard it can be for others to truly understand what that is like.

The value of having research happening locally came up more than once. Alison noted that opportunities to take part in studies often come from organisations based at the other end of the country, which is little use to families here in the North East. Having a clinic on the doorstep, offering transport and support for carers as well as participants, was felt to be genuinely different.

Finding out more

If you would like to know more, or to register your interest, please speak to Alison at Young at Heart and she will point you in the right direction or contact MAC Clinical directly by calling 0800 917 7601. There is no obligation to take part in anything — registering simply means the team can be in touch if a suitable study comes up in the future.

Note: This post is a summary of a community talk and does not constitute medical advice. Taking part in any clinical research study is a personal decision. If you are considering it, the study team will talk you through everything fully, and you may also wish to speak with your own GP.