Choosing an appropriate review period between 2 and 10 years

Marcus is a 27 year old man who received a diagnosis of Crohn's disease 4 months ago. Marcus experienced 2 years of Crohn's related symptoms before being referred to gastroenterology by his GP. His presenting symptoms were abdominal cramping, fatigue, joint pain, and diarrhoea. Marcus finds keeping up with university very challenging due to his daily symptoms.

Marcus underwent diagnostic testing of a colonoscopy and CT scan which found significant inflammation of the small intestine. He began a course of steroids to reduce inflammation, however this was found to be ineffective at improving his symptoms. His gastroenterologist recommended starting an immunosuppressant called methotrexate, but Marcus needs to get some blood tests before this can be started.

Marcus finds that fatigue is a very limiting factor in his daily life. He finds it exhausting to stand for prolonged periods of time throughout the day and finds that carrying out tasks such as showering and dressing leaves him needing to rest for an hour afterwards. Marcus finds that his joints also get sore if he does too much.

Marcus has been experiencing faecal incontinence due to frequent diarrhoea which comes on very suddenly. He has bought incontinence pads from the pharmacy help him manage this.

Marcus also finds that his mood has been low and has been struggling to adjust to his new diagnosis. He reports that he has lost all motivation to engage with people socially, particularly as he has been struggling with having to wear incontinence pads when he goes out.

Marcus finds that while he can still walk to the bus stop, he feels like he starts to get fatigued at around 150 metres and will slow down.

The case manager carries out a case discussion with a general health practitioner to discuss Marcus' condition and his treatments. The practitioner explains that Marcus' reported symptoms are consistent with a significant flare up of Crohn's Disease which has not yet been optimally managed. Marcus cannot begin his immunosuppressant treatment until his blood tests are returned - when Marcus commences this treatment it is likely that he will have a reduction in his symptoms, however it can take months before any benefit is felt and symptoms such as fatigue can be persistent even after treatment has started to take effect.

The case manager determines that Marcus is entitled to the standard rate of daily living. Marcus does not meet the eligibility criteria for the mobility element.

The case manager deems a 2-year review period to be appropriate for Marcus as his condition has potential to improve with appropriate medical management in the near future.

The determination letter noted that a review had been scheduled for 2 years to allow time for Marcus to receive and respond to the immunosuppressant treatment. The case manager advised Marcus that we would need an update from him on how effective any changes to his treatment had been in managing his needs arising from Crohn’s Disease.    

Ted (49 years old) has been struggling with severe depression for the last 5 years. Despite his condition, he was able to manage with the support of his wife, who took care of all the household responsibilities and managed his healthcare needs. His wife passed away 4 months ago, leaving Ted to cope on his own. His family realised the severity of the situation after his wife passed, and have tried to seek professional input to address his depression. He has refused to engage with any services and refuses medications. His siblings have now convinced Ted to apply for ADP.

The application explains that Ted’s symptoms include persistent sadness, loss of interest in activities, feeling hopeless, worthless and often tearful, poor sleep and poor concentration. Ted frequently expresses that he would be better not here, indicating a risk to self. The family has become reluctant to leave him unsupervised.

He requires prompting with eating as he has no interest and often skips meals with no appetite. This has led to weight loss. 

Ted doesn’t submit any confirmation from a professional with his application and has not provided any contact details for professionals.

He has however submitted a letter from his brother as additional supporting information. In the letter, Ted’s brother says that Ted is not currently engaging with any services and has not seen his GP about his condition.

He also provides more insights into Ted’s needs and the support the family provide: Ted experiences insomnia and paces around at night. The family have created a rota to supervise Ted, especially regarding his thoughts of no longer wanting to be here. There have been instances of Ted attempting to lock himself in rooms unsupervised due to these thoughts. He has lost all motivation and never leaves the home.

Ted also refuses medication and refuses to engage with services that may offer support, as he sees no point. His siblings keep medication away from him to reduce risk.

His family also express their hope that, with their increased support, Ted will make small improvements in the medium-term future, including engaging with services and treatment.

The case manager consults the DMG chapter on Gathering Supporting Information to understand whether good cause can be established for Ted not providing confirmation from a professional. Based on the chapter, the application form, and Ted’s brother’s description of Ted’s disengagement from services, the case manager decides that Ted has good cause for not being able to provide confirmation from a professional. This is because Ted has been disengaged from services for a long time and is currently still refusing to engage and therefore does not have any suitable documents at home, nor does he have any professionals involved in his treatment or care.

The case manager can now move on to establishing Ted’s needs without having to request confirmation from a professional. They consult medical guidance to better understand Ted’s condition and prognosis. They establish that, as Ted is refusing medications and specialist input and has recently lost his wife as his main care giver, it is likely that at present, the condition is unlikely to improve if Ted continues to refuse to engage with treatment. However, they establish that it is more likely than not that, over time, Ted will slowly become more open to receiving professional support and take medication.

The case manager awards Ted the enhanced rate of the daily living component and the enhanced rate of the mobility component of ADP and sets a 5-year review period. This is because Ted needs to be prompted to carry out daily living activities due to their low mood and lack of motivation, and as Ted requires to be supervised at all times to manage any risk to their safety in relation to their thoughts of suicide.

The determination letter noted that a review had been scheduled for 5 years. This timeframe would allow Ted space to potentially engage with professional support services. The case manager did not identify any specific updates Ted should provide at his next review, and noted that should Ted’s needs improve sooner, he is required to report a change of circumstances.

Jack is 49 years old and was involved in a serious car accident 7 months ago that resulted in substantial skeletal injuries including multiple fractures to his legs, pelvis and ribs.

Jack provides a discharge letter which shows that he had a lengthy hospital stay, where he underwent complex orthopaedic surgery and was placed in traction for around 8 weeks to allow for proper alignment of his bones. Following the traction period, Jack underwent surgery to repair his fractured bones and is scheduled for a further 4 surgeries over the next 18 months.

Jack required intensive physiotherapy and occupational therapy in hospital, and a home assessment was carried out to put appropriate adaptations in place for Jack going home. Jack is supported at home by his wife and his 21-year-old daughter.

Jack's application describes that he is struggling with generalised weakness and fatigue due to being bedbound in traction for months in hospital. Jack requires assistance with washing as he is unable to bend to wash the bottom half of his body. He also requires assistance with dressing as he is unable to bend to dress due to his shattered pelvis. He has had a raised toilet seat and handrails installed in his bathroom, but still requires physical assistance to get on and off the toilet due to his level of pain and fatigue. Jack's wife and daughter carry out meal preparation as Jack finds it very hard to stand or sit for long enough to participate.

Jack's ability to mobilise is significantly impacted due to his injuries. He has a zimmer frame that he utilises to move around the home and has been provided with a wheelchair for longer distances, however Jack reports that he doesn't go out unless necessary, for example to hospital appointments. He describes being able to mobilise 10 metres to the bottom of the driveway to get into the car, and his wife will push him in his wheelchair when they get to the hospital.

The case manager reviews Jack’s application, including the hospital discharge letter Jack has provided as confirmation from a professional. The establish that Jack is entitled to the enhanced rate of both the daily living and the mobility component of ADP.

They move on to determining whether a review period is appropriate. As Jack is still recovering from his accident and is still undergoing treatment which is likely to impact his needs in the medium term, an indefinite award would not be appropriate. 

They therefore go on to establish what review period would be appropriate for Jack. Even though Jack has provided a lot of detail in his application form, the case manager is unsure what the scheduled surgeries are and what Jack’s recovery afterwards will be like. They consult medical guidance but are still unsure. They request a case discussion. The practitioner explains that the surgeries include procedures such as internal and external fixation to realign and stabilise the bones, which may require bone grafting. Each surgery and recovery is estimated to be around 6 months to ensure that the surgery was successful and there has been no bone graft rejection, which means that it will take around 2 years for Jack’s surgeries to be fully completed. Following this, Jack will require an intensive rehabilitation programme aimed at restoring strength and function. Physiotherapy will play a crucial role in his recovery, which is expected to be long and challenging, however there is potential that Jack would regain some level of function.

The case manager decides to set a 4 year review period giving consideration to Jack's requirement for additional surgeries and lengthy rehabilitation period.

The determination letter issued to Jack explained that, as he had been referred for surgeries and would require time to rehabilitate, his award would be reviewed in 4 years. The case manager noted that, we would need an update on Jack’s daily living and mobility needs at his next review as we expect these might change following his surgeries and physiotherapy.

Sarah is 36 years old with a diagnosis of sciatica and has a number of daily living and mobility needs. She has had surgery but it was not completely successful. Sarah attends the pain clinic every month and continues to be under review by the specialist consultant every six months.

Sarah has been advised of further surgery she will need to have and has been placed on the surgery waiting list. The consultant specialist is hoping she can have the surgery within the next 2 years as this is the current waiting time. After the surgery Sarah will need time to rehabilitate for 6-9 months. She will need to have intensive physiotherapy for a further 6-9 months where there should be improvement in her condition.

The case manager determines that a review in 4 years and a half would be appropriate after taking into account:

• the waiting time for surgery
• the recovery period
• the treatment post-surgery

The determination letter noted that a review had been scheduled for 4 and a half years. This timeframe should allow Sarah to undergo surgery and make a full recovery. The case manager explained that Sarah would likely need to provide an update on how the surgery and physiotherapy had impacted her needs relating to sciatica and her ability to carry out daily living and mobility activities.

Julie is 50 years old and has had a diagnosis of rheumatoid arthritis for 11 years, and attends for a rheumatology review every 2 years. Julie's main symptoms include constant pain and stiffness in the joints of her hands, knees, and ankles, which can worsen when she has a flare up however she feels that her medication have reduced the frequency of these.

Julie's rheumatologist started her on immunosuppression therapy 4 years ago when her pain was becoming worse and she was requiring high doses of painkillers. Since commencing this treatment Julie only has to take naproxen every so often although prefers not to as they upset her stomach.

Julie discusses in her application that although her pain levels have improved, her rheumatoid arthritis has caused the joints in her hands, knees and ankles to become damaged and her fingers have become misshapen.

She finds preparing vegetables and lifting things in the kitchen to be tricky, however has bought some kitchen adaptations which she finds to be useful, and will sit to avoid putting additional strain on her lower joints.

Julie has also had some adaptations put in place in her home to allow her to maintain her independence, namely a grab rail in her bath and a raised toilet seat. Julie has difficulty with tasks that require fine motor skills, for example tying her shoelaces and dispensing medications from packs.

Julie's rheumatologist encourages her to keep active, which she enjoys doing and will go on short walks throughout the week. Julie has a regular route where she knows that there are places she can stop around every 130 metres or so as she needs to stop and rest her joints before continuing. Julie struggles to use a walking aid due to the stiffness in her hands.

The case manager has appropriate knowledge of the conditions having considered medical guidance and feels that the reported restrictions are consistent, however arranges a case discussion with a practitioner to discuss repeatability and reliability of aids. The practitioner agrees that Julie appears to be functioning well at present with the adaptations she has in place, however rheumatoid arthritis is a chronic condition which can worsen over time due to long-term inflammation damaging the joints.

The case manager awards Julie with standard daily living and no mobility component. They determine that a 6 year review period would be appropriate given the current stability of Julie's condition however keeping in consideration potential for future deterioration.

The determination letter noted that as Julie’s current condition and needs are  broadly stable, a review had been scheduled for 6 years. The case manager did not identify specific elements of Julie’s award that we would expect an update on at her next review. They explained that, as Julie has an ongoing condition, we would need an update on whether her needs have changed at her next review.

Margot is 49 years old and was diagnosed with breast cancer following a routine screening. Upon further evaluation it was determined that she required a double mastectomy (removal of both breasts) to remove cancerous tissue and minimise the risk. Margot underwent the surgery 3 months ago, which followed a 3 week stay and recovery in hospital. Margot has satisfied the backwards test already at the time of her application.

In her application form, Margot explains that she is undergoing 3 rounds of chemotherapy treatment, potentially followed by radiotherapy. She provides a discharge letter from the hospital as confirmation from a professional. The side effects of chemotherapy have been significant for Margot and she is feeling particularly fatigued and weak. Margot is anaemic due to her chemotherapy and has had a blood transfusion on one occasion. Margot also reports that the sensation in her hands and feet is altered and has been told this by her oncologist that is due to chemotherapy-related peripheral neuropathy.

Margot has to have a soft diet as she has developed mucositis (irritation of the lining of the mouth) which has caused her to lose weight, therefore she has been reviewed by the dietitian and been prescribed builder drinks.

Margot mentions in her application that as she lives alone she avoids going into the bath herself as she feels her balance is very poor due to neuropathy and weakness. Margot washes herself at the sink whilst sitting on a stool. She finds even this to be fatiguing therefore has to rest afterwards. Margot describes getting dressed as a very lengthy task due to exhaustion, and struggles fastening buttons and zips due to neuropathy in her hands.

She has developed diarrhoea due to her chemotherapy and this has impacted on her continence as she has no warning signs. Margot wears incontinence pads to manage this, and has also been provided with a raised toilet seat from the hospital as she was struggling to get on and off of her toilet.

In a letter provided as additional supporting information, Margot's sister explains her current situation and provides additional details about her support needs, which outlines that the chemotherapy has affected her memory and attention span therefore she relies on family to remind her of appointments and to deal with her correspondence.

Due to the combination of significant fatigue, weakness and neuropathy of the feet, Margot is finding it much harder to mobilise. Margot describes herself as previously being able to walk for miles, however now feels that she can struggle to walk to the post-box before she tires and has to rest, which she approximates to be around 30 metres.

The case manager determines that Margot is entitled to enhanced daily living and standard mobility.

In order to set an appropriate review period, the case manager requests a case discussion to learn more about Margot’s likely recovery process. The practitioner explains that the recovery process from a double mastectomy and breast cancer journey is a gradual and ongoing process due to the complicated and timely treatments. The practitioner explains that recovery from a double mastectomy can take several years, as she needs time to heal both physically and emotionally. Symptoms such as fatigue and neuropathy can persist long after treatment has been completed.

The case manager sets a review period of 5 years, as Margot's condition has potential to improve in the future however she is still undergoing significant treatment with a lengthy recovery time.

The determination letter issued to Margot explained that, as she was still undergoing treatment and would require time to recover, her review period had been set at 5 years. The case manager advised that, at her next review, Margot would need to update us on changes to her daily living and mobility needs so that she gets the right award for her level of needs at that time.