“In the UK we have some of the most amazing hospitals in the world,” begins Ms Douglas. “They are there to provide expert care, but currently much of their time is spent giving treatments that simply don’t need to be administered in a hospital setting.”

Since their inception in 1992, Healthcare at Home has helped more than four million patients to receive medical care in their own home. They currently support around 165,000 patients each year, which accounts for around one in every 500 patients in the UK. Ms Douglas believes that many more could benefit from what is a much more personal and holistic service. “There are many patients, particularly those with rare diseases, who spend their life in and out of a hospital and that impacts on other areas of their life,” explains Ms Douglas.

 

Josh's Story: a 360 film that takes the audience into the home of a little boy with a rare disease.


 

Easing the burden of rare disease

There are plenty of inconveniences that are part and parcel of living with a rare disease. Patients often talk of the all-consuming nature of the disease, for both them and their family. Simply reducing the stress that comes with multiple visits to hospital could make a massive difference to the quality of a person’s life. Add to that the fact that a nurse caring for them can devote 100% of his or her attention without interruptions on a hospital ward and the quality of care also increases.

For Ms Douglas, the area of rare diseases is of particular interest. As vice chair of Global Genes, a patient advocacy group based in the US, Ms Douglas is working with thousands of families who are in and out of hospital on an almost weekly basis. The physical and mental exhaustion of all those trips, Ms Douglas believes, could be reduced if more care was delivered at home. “We have some nurses who spend a whole day with a patient. Many of our nurses come from the NHS and want to work in an environment where they have the space and time to get to know a family and support them practically and emotionally.”

With this in mind, Ms Douglas is keen for a much broader discussion within the NHS on developing new care models that have dual advantages of reducing pressure on over-stretched hospitals and seeing better outcomes for many more people, not just those living with rare diseases. 

We work hard to find out what matters to patients and how to work in partnership with  patients and carers.


 

Devising new care pathways

“It’s such a political football half the time, but if anything good can come out of the current challenges facing the NHS, it may well be the opportunity to completely rethink some of our existing care models,” explains Ms Douglas. “By removing the need for frequent hospital visits for treatment, people with rare diseases can receive this care in the comfort of their own home, from specially trained nurses. This in turn, can really help to ease the pressure on our health system.”  

Healthcare at Home works in partnership with NHS trusts across the UK as well as private health providers and pharmaceutical companies who specialise in treatments for rare diseases. Their trained nurses and clinicians currently work across 50 different therapy areas and administer clinical care in the home to a broad population of people. A lot of their work also involves monitoring patient’s health and even training patients or other family members in techniques such as injecting medication, so they have much more freedom and control over their condition.

 

Greater collaboration

There has been plenty of controversy about “outsourcing” NHS services and the added levels of complexity, financial complications and necessary due diligence that go with it. However, no one would doubt that change needs to come and Ms Douglas’ believes a lot can be learnt from the way the NHS and independent hospices work together to provide palliative care.

“When a patient is terminally ill, there’s a lot of support at that stage and you feel well cared for, which is all down to good coordination of support,” says Ms Douglas. “That is already happening to some degree with more general care, but there’s more we can do on a broader scale.”

Whilst the idea of receiving a more personalised level of care within the comfort of your own home would appeal to most, many patients don’t even know that it’s possible. “We need to do a lot more to educate the general public about Healthcare at Home,” continues Ms Douglas. “Technology has come such a long way to enable treatments to be given anywhere, but patients just don’t realise it.”

As technology continues to advance and authorities look for alternative ways to manage the over-crowded hospital beds, clinically caring for patients at home could offer a compelling choice for everyone. The potential of clinical care in the home to release savings and capacity within a heavily burdened system must no longer be overlooked. Most importantly, for patients and their families with complex or rare diseases, they want to be able to live life as normally as possible. Treatment at home gives them greater empowerment and control over an important aspect of their care.

 

Healthcare at Home has one core philosophy: the patient comes first.

We constantly challenge the accepted norms in healthcare and adopt new technologies to deliver better care for patients. While Healthcare at Home has always been bold and pioneering in our approach, we have always been guided by simple logic – we do everything we can to make sure that the patient always comes first.
Every member of our team, from specialist nurses to drivers, has the same patient focus, and is dedicated to delivering the best possible care.